Hi Chris,
My heart goes out to you on reading about your horrific experiences over the past few months.
It has to be one of the most shocking stories I've read on here.
How you keep your sense of humour is beyond me, but thank God you're able to retain it - and your fighting spirit.
I felt I just had to reply, because your story really struck a chord with me
Your experiences took me all the way back to my darkest days in 2005.
Within days of having my very first PSA test (it came back at 182) in March of that year, I was having a biopsy done under general anaesthetic by a urologist.
I should have been home in six hours, but it was 7 days and six hours before I was able to leave hospital.
Everything went wrong, and was made far worse by neglect.
Through the first three days of agonising pain, none of the staff would listen properly to my complaints about something being wrong. I knew that the catheter wasn't functioning as it should. Time after time I was ignored.
By the fourth day, I was passing out and becoming delirious. My face was grey, and my pain was so bad that my wife rang the kids, telling them to get down to the hospital as fast as possible.
It was only through the intervention of two consultants (from another discipline) who happened to be visiting the urology ward that I was saved. Before I knew it the panic button was pressed, curtains were pulled around the bed, I was injected with morphine. and a team of nurses were helping the consultants clear masses of blood clots.
I will never forget the first words of the consultant who had spotted me. She said 'Never let yourself get into so much pain again'.
I can't remember answering, so must have passed out. My wife tells me I was delirious for a long time. Luckily, morphine blotted out those memories for me.
Chris, from that day on, my attitude to my PCa and its treatment changed forever.And of course, my opinion of that urology department, from consultant down to nursing staff is unprintable here.
The experience (and my anger) lit a fire in my belly which burns to this day. I vowed I would never again allow any clinician to treat me badly.
Looking back, I'm glad I experienced the worst side of care so early in my battle, because it made me 100% pro-active in choosing my treatment (and my doctors). It may even have helped me survive so long after the terminal diagnosis.
I have never had to raise my voice in anger, but have found that being very firm (but oh so polite) has seen me through the last ten and a half years with no further bad experiences.
Luckily I have an oncologist I have complete faith in, and after so many years we're more like friends than doctor and patient now. If only they were all as good.
You have suffered far worse than I did, and for much longer. If any good thing can come out of all your pain, it's that you can use the experience to make you stronger and more determined than ever to win through.
Wishing you a full recovery and some much happier, brighter, pain-free days ahead.
And - I hope to see you at The Mill next June looking 'damn good and worry free'
All the very best,
George
Edited by member 20 Oct 2015 at 11:48
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Chris, John's PSA went up to 0.1 and then 0.11 about 3 years ago and has then gone back to <0.1 more or less every test since. Too soon to panic, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Eight years ago today I got an unwanted early Christmas present, " you have prostate cancer".
Had surgery , had SRT, lost lots of things, gained a few things.
Still here, still have cancer but I can still smile.
Merry Christmas to you all.
Thanks Chris
User
It's important to understand the two types of breast growth:
Gynecomastia (breast gland growth), often with mastodynia (painful nipple sensitivity). This is caused by the ratio of Testosterone to Estrogens changing. Bicalutamide pushes up Testosterone level but prevents androgen receptors from being able to see/use it, so breast gland tissue thinks there's little/no Testosterone. On the other hand, Estrogens in men are manufactured from Testosterone, and the higher level of Testosterone causes a higher level of Estrogens. So breast glands see very little Testosterone and more Estrogens, which is their signal to grow. Tamoxifen is a selective anti-estrogen, and blocks some of the body's estrogen receptors, notably in breast tissue. (It does not block estrogen receptors in bone, so doesn't contribute to osteoporosis.)
The other type is breast fat growth (sometimes called pseudogynecomastia). This is caused by the loss of Testosterone, and the body laying down fat in a more female form. Breast fat growth does not cause mastodynia. Tamoxifen has no effect on breast fat.
Both types of hormone therapy can cause both types of breast growth. Bicalutamide is particularly well known for causing gynecomastia and mastodynia, typically from around 2 months on the medication (so it's not a problem for the 28 day anti-flare dose). You can feel your breasts to detect if there's any breast gland tissue there (firmer), or just breast fat.
User
Good grief Chris, George, are you two super-human or something? Extract of your bravery and tenacity should be fed to the England rugby team before the next world cup (not Wales, we was robbed).
My experience of NHS urology being on another planet is mild in comparison:
Getting appointments in the wrong order
Inability to read and digest my carefully typed (and succinct) history since TURP/LRP
Not having a clue how the b****y urodynamic testing machine worked
None of the three consultants involved at different times being able to give a consistent diagnosis and recommendation
Medical dictionary not having the word "stricture" in it
Being put on a maximum 12 month ("we are trying to get it down") waiting list for CONSIDERATION for an AUS nearly TWO years ago (no, I still have not heard anything).
My father, RIP just in time to finance me through the private sector
Oh, yes, and discontinuity half way through flow rate test when nurse walked into the room and asked me where the consultant was....
I think I may have to vote for Liane Wood (our Nicola Sturgeon) next year....
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
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Christ on a bike.
I am never going to complain again.
L xx
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Hi Chris.Im 4 weeks post De Vinci(operation performed in Bradford)&go to have my first PSA blood test next week followed up by a review with the surgeon the week after.Reading your story makes me wonder just what is to come,i like everyone else ive read am overwhelmed by your bravery,resilience&humour in situations most would find unbearable.Im just trying to regain fitness,get more continent¬ do anything to jepordise the blood test,but its so difficult to know what to do.I guess the PSA will be what it will be.I was Gleason 3+4(T3a)on Right side/Lside benign, with 12% disease(PSA originally was 5.2).You are an inspiration to us all.I wish you the best of luck in your journey back to good health&look forward to reading further posts regarding your recovery.
Best Wishes.
Polarbear2.
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Hi Chris,
Sorry to read that this is not going to plan.
Your dour sense of humour will get you through it, FCS don't lose that mate!
Will buy you a pint (of creme de menthe or Babycham) when I see you next. Hope you are both well and keeping smiling?
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
I think more people will meet up next year , whether it be MOTS or anywhere else. I'd love to meet some of the people I've 'met' on here , I truly would. It's an elite if slightly sad band of men and partners.
Chris , I think doubling time is always important , probably more so than the reading itself. Lyn probably knows better !! My post surgery psa was 1.5 and doubling time was 6.5 weeks which was a bit grim tbh. But you are still totally on a potentially curative path. I'm sure you could try to stamp your feet and get RT early. Yes , the norm is 0.2 but my friend was offered it recently after only two rises , and he is still only psa 0.9. So ASK
I'm so sorry you have had so many post-op complications mate. I've winced in sympathy for you over and over. There don't seem to be many winners here , truth be told , but there are understanding friends always. You can still beat this !
Chris
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CC, just don't tell Jamie that you know Si - he might refuse to see you :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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"Congratulations to those who are well on the road to full remission.
Commiserations to those who are still battling with this awful disease or its adverse effects and thanks to all the loved ones who have supported thier men during thier journeys.
Condolences to the loved ones of the men who sadly did not make it".
Chris, what a poignant, humbling message that is.
It has special meaning for everyone on here.
Here you are, four years on, after years of everything going wrong with your treatment, and yet you can type those words which say it all!
May you now look forward to things going right for you at last.
Nobody I know could have fought against your particular and constant problems with such strength as you have.
I salute you, and I pray that the day will come when we can all share good news from you.
Stay strong my friend,
George
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I don't have any advice to offer Chris but I'd like to return the support you have given me. I hope they can find a way to improve the waterworks for you soon. Best wishes.
User
i was telling Lesley this last night. It does offer reassurance
Bri
Edited by member 26 Jan 2019 at 10:10
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User
You’re a trooper Chris. Best wishes with it all.
User
Seven years ago today I had my prostate removed, I had hoped that it would eradicate my cancer. 12 visits to theatre to sort a stricture and remove three hem o lock clips and I finished up with a catheter for life. 4 years ago we had another bite at the cherry and the RT destroyed my bladder. I still have cancer, but still here still moaning. If only I had a pound for every time someone says "but you do look well". 😀
As always, thank you for all your support and advice.
Thanks Chris
User
I had the same experience when PSA rose in 2016. They just seem to look at your age and PSA figure without allowing for your medical,history. I think it’s shocking on a few fronts.
Edited by member 01 Dec 2021 at 21:39
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It was 12 years on Thursday since John was diagnosed.
Merry Christmas to you CC - let's hope that 2022 is kind to us all x
Edited by member 19 Dec 2021 at 01:45
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris and Chris, you haven't defeated it but you keep it sieged. Stay strong!!
Best wishes.
Lola
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Hi Chris sorry to hear things not going to plan. I just wanted to reassure you that systemic HT isn’t always as bad as you think. You know as well as anyone that I’m a huge advocate of QOL. I’ve been on Decapeptyl just over 2 yrs now. Zero weight gain , no moobs , hot flushes annoying but no big deal tbh , and my libido may be lower but still healthier than my wife’s. Tablets and pump still work just fine but orgasm can be elusive. Don’t hesitate if they tell you to start ( they told me I may only have a year to live ) , and ask for Decapeptyl maybe. It just seems to have less effects. Take care friend
User
User
Thanks for your update, Chris.
I guess the PSMA will show whatever is causing that PSA rise and and they'll give you a tailored treatment. Thankfully, many are available these days.
Stay calm🤗
User
Peter, it was the onco who does not want to take the risk, hence his comment "that's our choice to make not yours."
Franci, don't know about surgery being an option, is an irradiated lymph node as challenging as and irradiated prostate, I don't know. I did ask the question of why my PSA was rising and he said it happens. There may be ways around it but I don't meet the criteria for leuticeum, not had HT.
Ido , thanks, my brain is regrouping, almost back to not worrying about things I can't control. Big concern at the moment is taping and filling my daughter's utility room ceiling 😁.
Thanks Chris
User
That's the thing, isn't it? Is starting HT giving up or is starting HT giving yourself the best chance of being here in many years' time? TopGun started HT when it was clear that systemic treatment was needed, he used IHT successfully and lived another 14 years. Barry has travelled overseas and mixed his hospital usage in the UK to get the best focal treatments he can at each stage. We have others who have been incurable for 15 / 18 and now touching 20 years - different approaches but almost all have reached a point where they accepted HT was needed to stop the bloody thing in its tracks. I don't think anyone has lived 20 years by just hoping for the best. Good use of IHT may be tolerable? I am certain that you will come up with a plan that is acceptable to you and the medical team x
Potential knee replacement on the cards?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Just took the last of my 150 mg bicalutamide tablets. I have been on them for six months. The nipples are still tender and lumpy and fortunately the man boobs are are quite small. The sexual desire is still there perhaps a little reduced. Hopefully these minor symptoms will diminish over the coming weeks.
Appointment and next PSA test in 10 weeks. Still here, still moaning and far better off than many in the world.
Thanks Chris
Edited by member 15 Nov 2023 at 00:18
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No, Chris, it was me. I was afraid my post was excessive as I recognise I tend to be extremely emotional (I'm Latin and and Mediterranean) when it comes to expressing feelings. And actually, I was glad when I read your update. Those in the same journey are aware of the relevance any result or medical opinion has for us.
Big hug
User
I am now 18 months post op and following 5 PSA tests at 0.03 (last one was six months ago) my latest PSA is 0.06, still quite low I suppose but not what I had hoped for. The threshold to see the consultant is 0.1 so still a way off that and I was told there was a 30 percent chance of biochemical return following the histology on the prostate. I see my urology nurse Tuesday for my 18 month post op check up.
I have been through the mill in the last few weeks and do wonder if it has any effect on the PSA. Soon after my op I developed a stricture and had two dilatations which did initially sort the problem following the second dilatation I also carried out intermittent self dilatation until I could no longer get the catheter into the bladder.
On August 17th I spoke to my surgeon and queried whether I needed the third dilatation and possible incision into the scar tissue, my flow was still between 8 and 11 MLs/second. He told me he could improve the flow and we needed to know why the catheter would not pass into the bladder.
20th August I went into theatre for my third dilatation and woke up in the recovery suite, in retention being given a very poor local anaesthetic, morphine into my arm, signing a consent form and having something that felt like a knitting needle being pushed through my flesh just below the belly button and into my bladder. I had just had a super pubic catheter fitted.
The procedure had been aborted because there was too much blood and they could not see what was happening. A course of antibiotics and let’s give it time to heal. Five days later I was due to shut off the SPC and urinate through the penis. On the fourth time of passing urine the penis swelled up to a full size erection and I was in agony(OH at work again). A call to the GP and she said sounds like they have punctured the urethra and you are passing urine into the soft tissue of the penis. Opened up the SPC and fitted a bag no more passing urine and no more pain. No problems with this SPC quite comfortable and got on with normal activities.
28th September, time for another go, the plan is remove SPC insert camera have a look inside the bladder then pass a guide wire through the SPC opening into the urethra and out the end of the penis, then pass the dilators into the bladder neck and stretch up. So the SPC comes out and the bladder falls away from the front wall, they are now fishing around inside to get the bladder back in position and find the hole. They get the bladder back in position and carry on. So they get stretched up and get the camera into the urethra only to find a second Hem-o-lok clip from the original op has migrated into the urethra/ bladder neck. A replacement SPC is fitted and a new urethral catheter is fitted to the penis but capped off and left as a back up
I should be home the next day but a high temp, low blood oxygen, low potassium and the risk of infection keeps me in for four days and another course of antibiotics. Just prior to discharge the SPC stops draining so a bladder flush and the urethral catheter has a bag fitted. Friday at home all normal both bags draining and no blood in the bags.
Saturday morning, got up drained night bags still clear of any blood whilst shaving had some pain from a catheter bypass ( fluid passing between urethra and catheter) nothing unusual , I had experienced these many times in the prior treatments. When I started to remove my under wear I noticed the pad was covered in blood, not a mixture of blood and urine but pure blood. I shouted for the wife and as I waited for her noted that there was blood dripping from the end of my penis about one drip per 2 seconds.
I applied the pad to the penis to remove the excess blood and to my horror saw a lump of something hanging out between the end of my penis and the catheter (pictures on request), having suffered urethral damage and a complication with the bladder during the operation a few days earlier I was now getting quite worried. A doctor in the emergency department pulled part of it out and tells me it is a blood clot.
I will skip the procedure of getting readmitted to hospital but it was not fun. My consultant has now arranged open access back onto the ward if I need it.
A further four days in hospital waiting for the blood in the catheter bags to drop to an acceptable level.
Ten days after the last procedure I went to my GPs to have the SPC entry stitch removed and was told they would not take the stitch out as it was too infected and started me on another course of antibiotics. Seven days later another visit to the GP and again will not remove stitch, still too much infection, they have taken swab of the gunge and that should be back any day. 22 days after op wound is still leaking puss, hopefully when I see the urology nurse she is going to get a consultant involved.
Next procedure to laser the clip out and finish the job November 9th.
I am still here and still a lot better off than many others on here.
Edited to add the following because I received a PM that contained this comment "considering having the da Vinci operation,rather concerned reading your catalogue of difficulties" , my reply back was "if I could turn back the clock would I go down the same path 100 per cent yes " I would hate to think my minor misfortunes would put anyone off having the treatment that is right for them.
Thanks Chris
X
Edited by member 21 Oct 2015 at 11:23
| Reason: Not specified
User
Blimey Chris!
You have been through the mill!
Hope you get sorted soon and things settle down for you.
I'm no medic but your minute PSA rise could be attributed to a number of things, and at a guess recent trauma may have played a part ?
Best Wishes
Luther
User
Sorry to read that you are still having problems Chris but glad that it is not more serious, and may at last be getting sorted out for you both.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Gosh Chris
I'm so sorry that all sounds terribly awful. Actually worse. You brave guy !! I agree with Luther that all that pulling and pushing etc cud be the reason for that rise. And it's only one rise. Hang on in there :-)
User
Ouch ouch OUCH!!!
So sorry you've had all this trouble Chris. Hope you get it sorted soon
We can't control the winds - but we can adjust our sails |
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Chris, you tell an awful story with such humour and even temper.myou must have been in agony at times. I do hope you are getting to the end of it. Thinking of you and hope for a resolution soon.
User
2nd attempt. ..thought I'd posted once but not here.
Anyway, my legs are platted reading your post Chris...what a time you have had. As you know I also have a bladder neck stenosis and literally changed my mind regarding the op at the last minute...
I hope they get things sorted for you soon.
Hopefully the PSA will drop down by yiur next test
Bri
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Sorry to read of all your troubles Chris psa is still well down though hopefully just a blip all the best for November 9th Andy
User
Hi Chris
You really have had a rough deal - I am sorry to hear of your suffering.
Wishing you all the best on 9 November.
Kind regards.
User
Chris
I am so sorry you are still going through such an ordeal. Hope you are around that corner now.
Xx
Mo
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Hi Chris,
I'm so sorry for everything you've had to go through in recent weeks. No one should have to go through that. I really hope that they can sort things out for you really soon.
Look forward to meeting up with you and Dawn at another event very soon.
Take care.
Steve
User
at last Chris,
Some good news for you and Dawn.
Just one thing! Have you checked to make sure she has enough marigolds to attend to your every need mate?
OOPS!!!
Have you made sure that SHE has checked that SHE has enough marigolds to attend to your every need, and then some? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
atb to you both. Hopefully we can all meet up again soon.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
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Glad to hear your situation is improving, Chris !
Fiona.
User
really pleased for you Chris all the best Andy
User
Hi Chris
Glad to hear the catheter is out at last and you can now get on with your life.
Wishing you well with your forthcoming PSA test (mine is due very soon as well)
Kind regards
User
Phew...great news Chris
Bri
User
Originally Posted by: Online Community MemberCB
It gets worse,during my last stay in hospital the nurse injected me with an anti clotting medication gave me some pills to take and told me to drink some water. Thirty seconds later I grabbed a sick bowl tried to move into a better position, Dawn was half holding the sick bowl I emptied the contents of my stomach which went in one side of the bowl and straight out the other side all over Dawn. Unfortunately I had not bought her any aprons, but at least she did have some gloves to help clean me up. I do love her.
Thanks Chris
Tutt tutt tutt. She only caught half of it in the bowl, shoddy.
That you love each other is the best news. Suspect she loves you more?
dave
Edited by member 21 Nov 2015 at 08:36
| Reason: Not specified
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Really glad for you Chris. You've been incredibly brave I think. Let's hope everything gets back to normal.
Chris
User
Chris
I'm sure Dawn has had far worse than you missing the puke bowl, some men will do anything to get us ladies to take our kit off!
Seriously though I am sure that was minor price to pay for having you tube, bag and fancy free again. May your onward recovery be swift and complete.
Hope to see you both in the New Year
All my best wishes
Xx
Mo
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Hi Chris,
You've had a rough time of it recently. I really hope that things are a bit easier and you can look forward to a better new year.
Take care.
Steve
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Chris
Honest and Frank post so thanks for that. I am sure you have had more crosses than enough to bare so I hope 2016 is onwards and upwards for you in more ways than one!
Have you been following Tony and his posts on the pump?
I will message you after Xmas re the Newark gang.
I trust D is well and enjoying sporting her marigolds?
Xxx
Mo
User
Hi Chris pleased for you on the PSA results hope the other improves as well enjoy xmas Andy
User
Chris ,
I hope that all goes well for you this afternoon. Your attitude and determination that you share with us in facing this disease is great. And I follow your updates on ED too with interest, having just embarked on ED treatment myself. Before dx I would never have thought I should be making comments like that. But being on this forum has certainly changed my outlook on life !
John
User
Fingers crossed for you Chris.
Hope all goes well
We can't control the winds - but we can adjust our sails |
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Hi Chris
More General Anaesthesia? Just think of it as being like one of those Spa 'pamper days' where you get to relax for a while ( so I'm told).
Joking apart, sending you this by way of a brief message of support. Only sorry I can't be of more practical help.
User
Hi Chris
I can only wish you the best of luck. Boy have you manned up and been through the mill , yet managed to help and encourage others at the same time. Thankyou.
Chris
User
Hi Chris,
Hope the procedure goes well, you are due a good result. Tried to access your profile several times but keep getting 'Page not found'
Barry |
User
Hi Chris,
Hope everything goes well and things are much better for you.
All the Best,
Steve
User
Hi Chris..fingers crossed this sorts it at last for you
Bri
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Only just seen this... Hope all went well Chris.
KRO...
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Fingers crossed this time is the last x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris
thinking of you lovely man, hope this sorts out some of your issues at last. Its been a real tough ride for you and Mrs Chris.
xx
Mo
User
Hope all went well.
Thank you for all the help and encouragement you give.
Best wishes
User
Hope all went well, Chris and you start flowing at full rates again soon!
Paul
Stay Calm And Carry On. |
User
Hi Chris what a rough ride you have had, let's hope this sorts things out in the peeing lots front.
Keep posting with your upbeat words and support to others while you are going through the mill yourself, thanks
Chris/Woody
Life seems different upside down, take another viewpoint
User
Oh CHRIS
You have my sympathy, John was supposed to have the dilation treatment but it's been decided that an SPC will be needed for life so no point in going through more procedures. I think it's bearable if you truly believe it will make a difference, John had a CT scan recently, as you know, and it showed his prostate had infiltrated the bladder to such an extent that there is no point in more surgery.
On the other hand, I've got everything crossed that this latest op will improve the flow.
All the luck in the world
DM
User
Chris,
Naturally, we are all optimistic about our treatments and largely expect these will not involve continuing problems other than the usual side effects. You have been very unlucky for one reason or another and it says much for your strength of purpose that with the benefit of hindsight you would go through all this again.
We are all with you in hoping all these further problems with soon end.
,
Barry |
User
Chris
Oh my I feel so bad for you, so many procedures, ops and now another retention. I really wish that you could just get something that would make your life easier.
You still stay positive and upbeat despite everything which tells me that you are one strong man.
I will be thinking of you
All my best wishes
Xx
Mo
User
Sorry to hear of your troubles Chris hope things improve for you ..All the best mate Andy
User
Sorry to hear how things went the other day Chris. I just said a rude word loudly, on your behalf.
Sent with wishes of support. You've helped me a lot more than I'm able to repay.
User
Sorry to hear things didn't go as planned. Hope solutions are found quickly so you can get on with your life without worry.
Paul
Stay Calm And Carry On. |
User
wow chris, what a horrible time your having with this, made me squirm just reading about it, here's to the catheter fitting going easy
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Chris, that is quite a detailed account of a weekend in hell for you. I really hope that you get this sorted out. I've not had any problems like this at all and like Nidge , it made me squirm . But I really wish you well ( again!).
John
User
Hi Chris,
I'm so sorry that you've gone through all this. No one should have to. I really hope that everything will be sorted for you soon.
Steve
User
Maybe I won't have breakfast this morning after all 😬😬😬
Not again Chris. You have the worst luck whilst just trying to get better and move on. I don't understand why a catheter can't be just pushed through as normal ? Does the whole urethra collapse or something ? I hope it all improves soon for you.
User
Hi Chris, what a terrible experience I would not wish that on my worst enemy. I feel for you and yes it made me squirm as well, I do hope things go better for you as you are having it really rough at the moment. Why could they not do a spinal anasthetic for you in the hospital if that is way to get the job done?
Regards Chris/Woody
Life seems different upside down, take another viewpoint
User
Really feel for you Chris. Hope it's all a bit easier now
We can't control the winds - but we can adjust our sails |
User
I am so sorry to hear of your ordeal. I just don't know you coped with it all - braver man than me.
I very much hope things improve for you very quickly.
User
Reading all this made me squirm. You have had an awful ordeal, hope solutions are found quickly.
Paul
Stay Calm And Carry On. |
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good luck mate. Hope all goes well
You have made my eyes water
Don't deny the diagnosis; try to defy the verdict |
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Christ...i had tears in my eyes reading the account of your ordeal Chris. My urologist said to me if i ever go into retention not to let any Tom Dick or Harry near me...but not sure how i would stop them.
As you know they could not get the camera into my bladder but thankfully i can still pass urine,albeit at a slower pace.
I really hope they get you sorted mate
Bri
Edited by member 23 May 2016 at 20:54
| Reason: Not specified
User
Chris
You can imagine this made me cry at the memory of the New Year's butchery on my hubby. I can't imagine how men can inflict such pain on other men, it's horrific. We also had the "holiday staff" - don't get me started on the junior doctors after what we went through and John had to endure waiting 24 hours for relief and 3 litres in the bladder and 5 more litres stored in the body. I'm sure that's why he has now got kidney damage.
You have my utmost sympathy, I had no idea men went through this sort of thing. My eyes have been well and truly opened.
You have been a great support to us and although the SPC is a pain in the ***** at times, it has improved John's quality of life and I thank goodness he's got one.
Thinking of you Chris
Devonmaid
User
Hi Chris.. really living up to the thread title - none of us would like what you have just gone through to be in our plan.
Hope that things are now settling down a bit and that you get sorted out soon.
KRO...
User
Thanks Chris
John won't let me speak about this thread, it's too painful a memory. I do sometimes go on a rant about what happened, but mostly I am glad that he had an SPC and he can live fairly happily with it. It's definitely better than going into retention. I am always hoping you'll come out the other side with everything working well.
Lots of love
DM
Edited by member 26 May 2016 at 22:31
| Reason: Not specified
User
You really are going through it Chris, hope it improves quickly for you, will have to meet up some time when your a bit better all the best Andy
User
Blimey!
Just been reading your thread Chris...... Hope things eventually work out OK at long last.. ..... Must be a nightmare for you..
Making me stop to think again before I possibly commit to any further investigations in August re my persistent leakage problems...
Best wishes
Luther
User
Chris
I truly hope that you get some stability now, heaven knows you have had the most turbulent times , you always deal with everything so calmly and stoically. You continue to support others even when your own journey has been horrible at times.
Thanks for all your kindness and support
xxx
Mo
User
Mate !!!
Don't know what to say. I guess you'll have a plan of action ahead. You have had so much stuff done , never a complaint , and always been there to help everyone else.
Best wishes
Chris
User
Chris
I am so sorry to read this after all you have been through. Is there any chance of the psa rising because of infection.?
Several folks asked after you this weekend. I hope we can all get together soon.
Xxx
Mo
User
Hi Chris,
Sorry to read of this apparent rise or is it a "spike". Could it be just that? A "spike"? Hopefully!
Missed seeing you both at MOTS.
Maybe we can rectify this sooner rather than?
atb to you both.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
I am sorry to hear of the PSA rise and I can understand you feeling gutted.
I am very grateful for the support you have given to the forum and to me and the positive attitude you demonstrate despite great difficulties.
Sending you and your wife my best wishes.
User
Chris,
Really sorry to have read this news. As ever, wishing you all the best. Stay strong. You're such a help to so many of us here, our turn to help you.
John
User
Fingers crossed it's either infection or all that messing about with catheters and dilators? Hoping things settle down for you.
Rosy
User
Hi Chris,
So sorry to hear of the PSA rise, let's hope it's just something unconnected with cancer that caused the rise.
I fully understand the way you must be feeling just now.
Have faith.
Steve
User
Thinking of you Chris and wishing you good news (ie as in infection!)
We can't control the winds - but we can adjust our sails |
User
Ah Chris
That's really tough to hear after everything you've been through. I'm not sure if this helps but the urologist said not to test for PSA at the hospital on Monday as it would be raised due to the RT and the ongoing infection. Therefore it wouldn't be an accurate result. I'm hoping this is what's caused your rise. As others have said, you are such a kind man, always there with a helpful word. I hope we can be there for you as I know this is hard to bear.
Lots of love
Devonmaid xxx
User
sorry to read of the PSA result Chris hopefully a blip due to your other problems, all the best mate Andy
User
Chris,
Sorry to read this.
Can only repeat what others have said and hope this is a temporary blip.
KRO...
User
Hi Chris,
Wishing you the very best of outcomes today, after this ninth procedure.
You have been through so may procedures that it makes me wince just reading about them.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
You're a very brave guy!
Hoping to hear very good news from you in the next week or so.
All the best,
George
|
User
Lego is my bet. It gets everywhere. All the best Chris. You're a brave guy
User
Hope it went well Chris and they got the little Lego man out in one piece!!
******
We can't control the winds - but we can adjust our sails |
User
hope its good news today Chris, take care Andy
User
Good to hear that it was nothing more problematic or sinister Chris.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Ouch Chris, you have our sympathy. Hope it settles down again quickly.
Lots of love Devonmaid
User
Hi Chris you really have been through it. So glad to hear though nothing nasty. Jx
User
Chris
I had visions of you coming back to say it was a Pokemon and half the medical team were out trying to catch it.
Seriously though, thank goodness it was nothing more sinister, you have been through so much already I think you are amazing for managing to retain your lovely sense of hunour.
Best wishes to you and Dawn as always
xx
Mo
User
Pleased to hear that it was 'only' a clip - have you asked how many more of the b*****s there might be floating around????
Hope you are on the mend soon
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hope it's sorted the problem now. But where's the lego man??
User
Hi Chris,
Glad you got things sorted. Lets hope for a quieter time now, you've been through enough.
All the Best,
Steve
User
Blxxxy hell I thought the research suggested there was a chance of one migrated clip. Is this the 2nd or 3rd. You have been so unlucky with this Chris but good to see you retain your sense of humour.
I hope you turn that corner soon.
Bri
User
Thank you all for your kind messages.
Back home now with another catheter for 10 days, surgeon is taking no chances this time.
To answer the questions, this is Clip number three and despite asking how many clips were used, I never seem to get a totally straight answer but he did say he used two either side of the urethra so at least four.
A few of us who had surgery at the same time did have clip migrations, but the trauma of the way the catheter was removed and the type of catheter seem to be a contributing factor to the migration. Since changing the type of catheter used there have not been any other migrations.
The neck has been stretched to size 20, glad I was under general anaesthetic. After six weeks of frequent night visits to the loo I should get at least ten nights of undisturbed sleep.
Rosy, the lego bit goes back to an earlier post were I said a piece of plastic had been found in the bladder, Lyn enquired if it was a bit of Lego.
Just need to get the flowers or chocolates.
Apart from taking 8 hours (6pm _2am) to get my own medication written up by a doctor and 4 requests for a clean gown to replace my wet gown the care from the staff and care were first class. A night on a noisy ward in a bed with a waterproof mattress with a couple of waterproof bed guards on a warm August night is not top of my lifetime best experiences.
Consultant is still being optimistic that the PSA could remain low or even decrease,we will know in a few weeks.
Thanks Chris
User
Blimey!
3 clips is it now?
I reckon that you have single handedly re-written the statistics on clip migration!
Glad this episode is over mate... and hope there are no more!
Keep Right On....
KRO...
User
Need another Newark to celebrate
it's only clip migration
TF
:-)
dave
Edited by member 23 Aug 2016 at 20:38
| Reason: Not specified
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Rosy, the lego bit goes back to an earlier post were I said a piece of plastic had been found in the bladder, Lyn enquired if it was a bit of Lego.
I did get that - sorry - just my sense of humour!
Hope you enjoy some good sleep.
User
Chris
I really hope this gets you back on the right track again, so many blips,clips, flips and trips back to the hospital you must feel dizzy with it all.
It is frustrating when medics do not seem to listen to a possible problem, the knowledge of which was gained from a prior personal experience. I hope to goodness that you do not need to try and convince them again at all.
A good night's sleep is a wonderful tonic so I hope they can continue post catheter.
my very best wishes (those go for a reduction in PSA too.)
xx
Mo
User
Hi Chris,
I'm glad you're over that ninth procedure, and have had a decent sleep at last.
But, honestly, THREE clips migrating?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
I was reading your post, and just shaking my head.
As you said:
"In future if I ask for a cystoscopy because I think something is blocking my urethra, I hope I will be listened to."
Why do so many consultants/surgeons take no damn notice?
It's the patient that suffers not them. I wonder how they'd like to cope with the agonies you've been through over such a long period?
It can only get better now Chris.
All the best,
George
|
User
Hi Chris really glad that at long last you have managed to get a good night's sleep. Just make sure that with all this new energy you don't over do it. Take care jx
User
I think she might know my son?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Your inbox is full - tried to PM you. Re the elephants Mo and Julie have both previously given advice on dealing with them but I think yours is a different variety!
Edited by member 25 Aug 2016 at 09:34
| Reason: Not specified
User
Hi Chris not sure if you got my reply to pm as in box full. No problem, take care jx
User
Hope things settle down for you now, Chris. I've been very lucky compared with what you've endured.
Paul
Stay Calm And Carry On. |
User
good news on the PSA Chris ,hopefuly everything will settle down for you shortly , take care Andy
User
Good result on the PSA Chris, nice to read this.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Great news about the PSA Chris. I very much hope the other problem will get sorted for you soon as it can't be pleasant for you.
Kevan
User
Great news about the PSA results, Chris. Long may they continue to be good
Take care,
Steve
User
Delighted to read about the PSA Chris.
On the subject of bladder emptying we had the district nurse out the other day and she said that she thinks John is still retaining. He's still got both catheters in but they are blocking constantly with something called kidney sludge (yuck). Nothing is straightforward with our nether regions!
Love
Devonmaid
User
Chris, great PSA result. Just hoping you can get some resolution of ongoing urinary issues. Tony PW has such a good and informative thread on his AUS journey.
Looking forward to seeing you and D soon.
Best wishes as always
Xx
Mo
User
Great news on the PSA Chris.
User
Good news on the PSA Chris.
KRO..
User
Hi Chris hope all settles down soon, good news on psa. Jx
User
User
Fantastic news Chris, well done so happy to read your news.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Chris
Not spoke for a wee while but glad to see that your PSA is holding and not rising, take it as good news.
Just reading a bit about clip migration, I too had that and had the operation a couple of months ago where they found two clips in the bladder region which was giving me quite a bit of discomfort which lasted about 3 months prior to the op, such as pain and the need to pee regular and I had trouble trying to hold it back due ton the pain.
Like you I tried to tell certain individuals what my problem was but I was put on overactive bladder tablets but the problems persisted for three months before I finally got the operation to remove the clips. I can understand your frustration with trying to communicate with some people, as sometimes you feel that they are not listening.
Now I self dilate every second day which has now become routine. Starting RT on the 18th Oct so hopefully it doesn't affect the continence side of things as this has settled down pretty well.
Take care.
User
Hi Chris
You don't need me to tell you but keep pestering the people that matter, I took it into my own hands when I thought people weren't listening.I know these people are busy dealing with others but sometimes you have to be selfish.
Really feel for you having to self dilate twice a day, I was everyday but now it's every second day which ain't too bad but for you it must be a nightmare.
Take care mate and I hope you get it sorted sooner rather than later.
Cheers
Sandy
User
Hi
Just out of theatre after urethral procedure number ten, no clips this time which is a little disappointing as it means the scar tissue is building again. Just seen consultant all went okay got a four inch drainpipe as a catheter ( okay a size 22) wait and see what happens, catheter out in a week.
Thanks Chris
Edited by member 25 Oct 2016 at 17:58
| Reason: Not specified
User
Hi Chris
You must have a season ticket for the theatre in your hospital.
I didn't know they did size 22, thought it only went up.to size 20
I use a size 16 for ISD and that seems big.
How do you know that the scar tissue is returning did they tell you.
Take care
Sandy
User
Hi Chris
My turn to wish you luck. Hope all works out with your latest procedure.
Brian.
User
Really feel for you Chris everything crossed for you .Andy
User
Chris
I really am sorry you are having to undergo yet more surgery. I hope you make a speedy recovery and that the procedure did all it was expected to.
Best wishes to you and Mrs CC as always
xx
Mo
User
I have normally coped well with catheters, but I have never been so pleased to get rid of the latest size 22. The pain of bypassing or bladder spasms have been up there in the 9s and 10s, only for about three or four minutes at a time but sometimes 5 or 6 times an hour and every time I got up. In bed at night absolutely nothing, so I guess it was just in the wrong place.
Did the obligatory three samples and scan, flow between 10 and 16 and about 90ml left in the bladder. One accident already, no warning it was on the way. So back to square one again, but I as I always say I am still here to moan about it and I alot better off than many others.
Thanks Chris
Edited by member 04 Nov 2016 at 16:37
| Reason: Not specified
User
Pleased you have got the catheter removed Chris , hope things improve for you .Take care Andy
User
Hi Chris
You'll be relieved to get the catheter out, I can relate to the spasms as I also got them when the i had a catheter in after surgery and it is not nice.
I've had to reduce the catheter that I use daily to a 14 due to radiotherapy just now.
Take care mate and I hope things get better for you.
Sandy
User
Sorry to hear of your continuing struggles Chris. Hope with the catheter out things will settle a bit.
User
Really sorry to hear this Chris. You don't deserve any of this after all you have been through. It's such a credit to you that you have braved all you have and are still facing the future with your head held high. I think I may have given up long ago tbh. I hope you can make the right decision after careful thought
Chris
User
Hi Chris,
I'm really sorry your PSA has risen again. I think if you could have the RT it could help a lot if they are able to give this.
You've had a tough time since having the op. You deserve better luck now.
I'll be keeping my fingers crossed for you. Take care.
Steve
User
Sorry to read the latest news Chris.
I hope they can sort you out asap.
We can't control the winds - but we can adjust our sails |
User
Sorry to hear of your latest situation, Chris.
I hope a successful solution can be found for you ASAP.
Best wishes,
Arthur
User
So sorry to read your news Chris ,you have been through so much hopefully the RT may not effect you as much as you fear and get the remaining cancer. .all the best mate Andy
User
Chris, wishing you all the very best!
User
Hi Chris.
Sorry to hear the news mate.
Hope something can be found to help you.
Cheers.
User
Hope it all goes well Chris and the RT will go better than you expect, all the best Andy
User
Hi Chris
Long time since I have posted, sorry to hear that you are still going through so much hassle. I had a dilation and was using a size 16 catheter pre RT but have now had to reduce it to a size 14, keep trying 16 but it will not go through. I am dreading the day that the size 14 doesn't work. Had my post result from RT and PSA was 0.2 and undetectable, so I was over the moon only to be brought back down to earth by my consultant who informed me that this was expected and nothing would change until I came off the HT next March. Again I know it is a year away but the fear and dread has raised its ugly head. Just wondering how far down in the catheter size did you go before you had your next dilation. Anyway hope all goes well with your journey mate.
Cheers
User
Safe hands CC .... the best you could wish for, I think. I hope it goes well.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Good luck Chris. My fear when I had RT was that the stricture would be compromised. Fortunately it wasn't.
Hope all goes well and agree you are in good hands
Bri
User
Chris I hope so much things go well for you and that your structure holds out. You've faced so much mate. The dreaded words RT were repeated to me again last week , so sooner or later ........
Best wishes mate and I'm eternally grateful for you teaching me something I never knew haha
User
Hope all goes well with your latest treatment plan Chris
Best wishes,
Arthur
User
Any one in the hands of Jamie is in safe hands I am sure Si would second that .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Chris,
I hope everything goes well and all the difficulties you have faced over the last couple of years, disappear. You have been through enough.
Now is time for things to be sorted. Good Luck.
Steve
User
Hi Chris
Welcome to team Jamie great bloke for heated discussions
Hope all goes well
Si
Don't deny the diagnosis; try to defy the verdict |
User
Hope it goes well for you Chris, i have just got back from city hospital having a bone scan, could have met for a coffeehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif
Don't deny the diagnosis; try to defy the verdict |
User
Good luck, Chris.
Hug,
Lola.
User
Very, very best wishes to you Chris!
User
Hope all goes well for you and that you get a good result.
User
Fingers crossed for you Chris.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Good luck with your RT, Chris.
Keeping everything crossed that this treatment will give you the best possible outcome.
I think radiotherapy made a massive difference to my chances back in 2005.
This may well be the year that everything changes for the better after all you've had to contend with for much too long.
All the very best,
George
|
User
I'll be thinking of you Chris. Hope it goes well
User
Best wishes, hope it all goes well.
Sandy
User
User
Keeping my fingers crossed for you, Chris
Steve
Edited by member 08 Apr 2017 at 12:50
| Reason: Not specified
User
Thinking of you Chris. I think oncologist J running 70 mins late was because he needed a swift G&T after seeing Si 😜
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif Not my fault, i see Jamie Thursday
Don't deny the diagnosis; try to defy the verdict |
User
Chris,
You have been amazing member of this forum, I thank you for all your contributions.
I wish you all the very best for the future which I sincerely hope will be long and happy!
User
Chris, everything is going to be OK. And if any other issue, as you say, lots of options to go.
The best to you,
Lola.
User
Keep smiling Chris, I know, like me, you tend to be a glass half full person so keep positive
User
Hi Chris,
Half way through the RT, here's hoping the rest of the treatments go both well and quickly for you and you get a great end result
Best wishes, Arthur
User
User
Hi Chris
Finished salvage RT in June 2016.
First PSA in Sept, then December, then March 2017. PSA doubled within 6 months to 1.2 so now on HT.
All the best
Kevan
User
Hi Chris, I finished the RT in Sept and had the first PSA test the following March so 6 months.
It then took 2 years to reach its lowest point
Bri
User
I think it is a bit like the chemo CC - the PSA can rise for a short time after RT as the cancer cells die off so PSA is not reliable immediately afterwards.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Well done Chris. They told me any side effects would peak about two weeks after the RT ended
Enjoy the summer ☀️☀️
User
Hi Chris,
Pleased that you have completed RT ok. I think you will have a few side effects in the coming weeks but these should settle down in time.
Hope everything goes well for you from now on. You deserve an easier time.
Take care.
Steve
User
Good luck for the coming weeks and months Chris.
Hope your recovery goes well
We can't control the winds - but we can adjust our sails |
User
Best wishes as always Chris.
User
Hi Chris hope things settle down quickly for you All the best Andy
User
Just catching up with the news, and can honesty say I had my legs tightly crossed reading yours.
Hope everything went as planned, and although recovery is slow, things will get better.
Take care.
toad.
User
Yay Chris. Hopefully well worth it I'm sure. You're a trooper mate.
User
That is so good to see - congratulations x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
User
User
User
Well done Chris.
Very pleased for you.
We can't control the winds - but we can adjust our sails |
User
Top news Chris! Chuffed to rocks for you!
User
Great news Chris. It's a great feeling isn't it.
All the best,
Kevan
User
Fabulous news Chris
Keep on rocking
Paul
User
User
Woo hoo! Fab news indeed...
User
User
Fandabidosie .
Brilliant result .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
That's wonderful news, Chris.
Really pleased for you.
Steve
User
Oh wow, so delighted to see this news.
User
A packed 2 carriage train Chris? That would be the final straw for me. ;-)
Adore your resilience. Choose wisely mate, and then go for it.
atb to you and D
x
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Oh man I remember you trying to decide what to do and I voted for bladder out back then. You’ve been through all this and it’s not worked :-((
I so admire you , always have , and feel so awful what you’ve been through though I’m probably yet to experience it myself. Try and stay strong Chris. Our love and wishes to you
Edited by member 08 Mar 2018 at 08:42
| Reason: Not specified
User
What a choice to have to make Chris,
Good luck with whatever path you go down
You are one strong man
***
We can't control the winds - but we can adjust our sails |
User
Sorry to hear about your latest situation, I hope they can find a good resolution for you soon.
Best wishes, Arthur
User
I know you will make your choice and live with it Chris as you have always done.
You are very strong, hope you get things sorted out.
Ian
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User
Hi guys
Well I had a couple of days in The Christie this week and I have got to say it is a superb hospitial.
I had cystoscopy and urethrotomy under general anesthesia, the surgeon has cut into the stricture so a little nervous of how that will affect my already iffy incontinence. They filled the bladder to ascertain it's capacity and sadly it it now down to 120ml. The bladder is badly scarred by the radiotherapy and there is little chance of the bladder recovering. I see the surgeon in a couple of weeks to discuss options but it comes down to Suprapubic catheter for life or bladder removal and urostomy bag, I am leaning towards SPC but do wonder how I might cope as I get older.
I now have two catheters again for two weeks, on this occasion the SPC is trouble and pain free, the urethral catheter is very uncomfortable mostly in the perineum area, the instilagel soon relieves the tip of penis stinging. I had forgotten how in uncomfortable bypassing could be.
I am going to have another 20 sessions of oxygen treatment, not over optimistic of it working, but there does not seem to be any effective treatment for radiation damage, only management of the side effects.
For my moaning subject I will pick hospital gowns, mine only had a tie trap on one side and I got fed up of seeing men's bare backsides hanging out of untied gowns.
Thanks Chris
User
So sorry Chris really I am. It’s an utter credit to you as a man what you have squared up to. You’ve never given up and I doubt you ever will but we genuinely feel so sorry for all you’ve been through. Strength to you both from us both
User
So sorry to read your latest update Chris.
I'm sure you'll deal with it all in your usual phlegmatic manner.
Good luck and Best Wishes
We can't control the winds - but we can adjust our sails |
User
Chris what an awful time you continue to have. I just hope some kind of doable procedure can give you some respite. Thinking of you,mate.
User
I thought the NHS had done loads of work around respect and dignity? Apparently, the newsletter about patient bums hasn’t made it as far as the Christie :-/
A terrible choice for you to make but I think you have a real trust and confidence in your surgeon who will guide you in the right direction. Did you ask though, if you choose SPC now does that completely rule out bladder removal in the mid to far future?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Sorry to read this Chris. As others have said you have dealt with issues as they come along.
I really admire how you have done that.
Hoping you can get a workable solution to this.
Wishing you all the best, Ian.
|
User
Thanks for the support guys.
Lyn
I think it is the older male patients who need the newsletter, preferably pinned to the back of their gowns. The staff are very good at the modesty and privacy procedures,saying "knock knock" and always asking before entering closed curtains etc and very quick to cover up the elderly gentleman's exposed bits when thet get out of bed or come out of the bathrooms etc.
As regards the SPC if you mean am I aware a long term catheter can cause bladder cancer then yes I am. Having a urostomy or a SPC still means messing around draining bags etc. My new normal is having a suprapubic and I can cope with it. Going through another major op and with my luck having possible complications isn't a risk I want to take at the moment. It is a pity there is not a reasonably priced decent incontinence system that does not involve clamps or gluing things to my penis.
Sandra not sure about phlegmatic, I have my ups and downs and some very dark days. Just coming up to the fourth anniversary of my surgery and it take its toll. In my bay at hospitial there were 4 beds the other three guys were all in a worse situation than me.
When I started my journey nearly four and a half years ago there was talk of a vaccine for PCa, within 5 years, will it happen this year ?
Thanks Chris
User
https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif https://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Sorry no, I wasn't thinking about bladder cancer down the line - I was just thinking that if you choose SPC now and then can't manage it when you are older, would you be able to have the bladder removed? In other words, you can't choose option B and then revert to option A but could you go with option A and still have option B if you needed it?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Bloody hell Chris....what a decision. As others have said you have had it tough but you continue to face up to the issues with dignity
Stay strong mate
Bri
User
Hi Chris,
Blimey. What to say? All along, you have been just amazing, stoic, strong, taking each new hurdle in your stride. Much respect.
As for people being worse off than you? There will always be people worse off and better off. Mind you I think there are probably fewer people in the latter category? Anyway, it does not detract from your situation.
Make your best choice, and go for it. Your luck has to change some time!
atb to you and D.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Hi Chris
Thank you for sharing your story over this time as the information and advice you share has been and will continue to be appreciated by many on this site.
Very best wishes to you.
Kevan
User
Thanks for this message Chris. It sums things up nicely.
Best wishes to you, Ian.
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User
Three years mid June for me and it’s far from over. I guess it will only get worse. I can’t think of many men who have had it tougher than you Chris. You’ve been amazing and strong
User
Hi Chris, so sorry to hear all the trouble you've had, I will stop complaining about the little i have gone through. I also suffered bladder retention and I know how painful that is, I had to be re-catheterized and ended up getting a water infection that was sorted fairly quickly with antibiotics. But my God what you have had to go through is just unbelievable.
Stay strong and I hope that you win your battle.
User
Ants
Welcome to the site, complain all you like, that is part of the reason for the site. Our individual problems great or small are important to ourselves. I joined another site that supports people with radiation damage, my problems pale into insignificance when I read some of thier stories.
Hope your recovery goes well.
Thanks Chris
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As per recent discussions , that result has zero value potentially. Unfortunately!!
Quite understandably I’m seeing a sad Colwick Chris and not your old self which makes me quite unhappy too. You’ve had it really really tough compared to a lot of us but have kept digging in and put a brave face on it all. I so hope surgery could fix things for you Chris. No one knows the right path but I’m steadfast on mine. Quality over quantity. I think pain and discomfort is the only thing that will sway me which sadly you’ve had plenty of. Otherwise I’m happy chugging along on zero treatment at all with psa over 38 and no test till January next year. Please keep well my friend. Don’t give up
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Good luck tomorrow Chris.
I hope the meeting gets you whatever it is you need and want
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We can't control the winds - but we can adjust our sails |
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All the best for appointment today Chris.
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Hope the appt has gone ok Chris
Bri
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hope Your app went as well as you wanted it go Chris
Viv
X
The only time you should look back is to see how far you have come
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So how did it go? I hope there is a plan in place and you are feeling okay about it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Quote" Having said all that I am still here and still moaning, and the ******* train only had two carriages instead of four again."
and the train isn't in the siding yet Chris. !!
*****
We can't control the winds - but we can adjust our sails |
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And the support you give others has been fantatsic too xxx
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Well done, Chris. Keep fighting and have a great Xmas.
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris sorry to hear the PSA has risen. I have no idea if the sexual activity bit still applies. I think it’s unlikely the bike riding will as there is no prostate to ‘massage’ with the seat.
Here’s hoping the PSA has dropped in four weeks. Im giving blood next week to see what’s happening with my rise
Keep the faith Chris
Bri
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Just sending best wishes and regards and respect from us both. Spent 7 hrs at hospital today getting a full body bone scan and stuck in the waiting room with an end-stage guy and his wife. It only seems to get bl**dy worse and worse doesn’t it !! Can they still remove your bladder Chris?? Is that still on offer ??
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Sorry to read that Chris. Sending good wishes.
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Hi Chris,
Sorry to read that the figure is an "actual" value.
I don't know the answer to your question, maybe someone at the helpline can assist?
Fingers crossed for your test at 4 weeks.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
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Hi Chris Fingers crossed for you also and hoping that it's as you say just the poking and prodding that's caused the rise in your PSA. Would seem a possibility to me.
Best Wishes
Ann
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Just returning support Chris. Sounds like good advice above.
Hopefully just a blip
Good luck
Cheers
Bill
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Hi Chris,
Hope it drops back down soon. Good luck.
Michaela
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Thanks to you all for your support.
CJ I can still have the bladder removed but it is a major and risky operation, I joined a urostomy site and I know what we say about forums but many have to deal with leaking bags and stomas. Many also suffer with phantom urges and pelvic discomfort. The SPC is an inconvenience but is manageable.
Kentish , what a trooper you are.
Lyn
Not quite in panic mode yet, disappointed yes. I follow John's progress with great interest and as Bri says it is reassuring to see his results. Do you have a view on the elevated PSA being caused by the op ect?
Thanks again to you all Chris.
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Hi Chris
Just adding my wishes that this is a blip.
PP
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Hi
One month on from the last PSA and a slight rise from 0.10 to 0.11, not much but would have preferred a slight drop. So 20 months on from SRT I would have hoped for something lower. Onco nurse has suggested three month testing and see onco if it gets to 0.2. Main thing still here still moaning.
Thanks Chris
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Heres hoping is stablises Chris. Lets keep each other informed on clinical opinions as it looks like we will be getting tests at the same time
Bri
Edited by member 22 Feb 2019 at 16:26
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Gutted for you but all is not yet lost
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Sorry to read this Chris.
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Sorry mate. Lets hope it is still a blip.
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Hoping that this is a blip too Chris, love your attitiude
love Devonmaid xxx
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Thank you all for the support. So Monday evening I went for my follow up appointment with the urology consultant who is injecting my bladder with Botox. Given the state of my bladder he was surprised that the Botox had actually have any beneficial effects on the spasms and continence. Access to the bladder was quite difficult and at one point during the procedure he did consider abandoning the process. The radiation and or previous treatments have left me with a very rigid urethra and bladder neck. The shrinkage to the bladder also makes manoeuvring of the scope difficult. We may try accessing the bladder through the SPC next time.
We discussed bladder removal etc but he is concerned that possible radiation damage to the bowel would compromise the formation of the drainage arrangement and I would then be left needing a alternative way of draining the kidneys. So I am going to keep the SPC.
A bit of advice from the consultant, never have an SPC changed on a Friday afternoon, try to get it changed mid week and in the morning. If the replacement SPC will not go in, get to a urology department or ward within an hour, do not go to the emergency department.
The consultant also suspects that the prodding and poking of the procedure may have elevated the PSA results and the repeat test was probably taken too soon after the Botox procedure. I am not totally convinced but I cannot do anything about that so I will patiently wait until the next test in three months time. One thing I have learnt from the whole journey is to be patient and not get over stressed with the situation. If you can resolve a situation get on and do it , if you can't make the best of it.
Thanks again for all your support and thank you to Prostate cancer UK for providing this forum, it may have some glitches but the pros far outweigh the cons.
Thanks Chris
Edited by member 28 Feb 2019 at 08:05
| Reason: Not specified
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Update
5/6/2019 PSA 0.11, so no change. Botox to the bladder is starting to wear off but just waiting for a date for repeating the process. Now five years from RARP and two years post SRT. Still here still moaning.
Thanks Chris
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Great news on psa chris. Hope you’ve reached a more steady , comfortable place !
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That’s good news.
Long may you be here moaning! You’ve earned the right.
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Seems we are both on a plateau at the moment Chris. I’m not having a PSA test for 6 months. But will keep an eye out for your 3 monthly result which I hope dips
Bri
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Glad to hear the good PSA news Chris and hope your other issues are still improving.
Cheers Bill
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Hi Chris,
Could that result be a blip, different machine, recalibrated machine etc? Or is it in line, ish, with your other results? I don't know what level they start to worry at? I know I start to worry at any rise.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
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You posted in Feb that the nurse had advised you to have 3 monthly tests so was there a result in May or did that test get missed?
Either way, you are aware that 0.22 is significant for a man with no prostate. All you can do is wait for the next test result and see what onco suggests ... if they are still saying in October “too low for scans” you will have a number of us supporting you to challenge that! PSMA, gallium, choline 68, FACBC - more sensitive tracers are coming along all the time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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It's usually me that posts 'some oncos wait until 5, 10 or even higher' 😂 However, that is for men who will have no other option but long term HT and possibly chemo. I think it is worth a detailed scan as early as possible after October just in case there is an isolated met that can be zapped unilaterally. That's what Mr B intends to do when John gets to 0.2
Edited by member 01 Aug 2019 at 20:50
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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John just ignores it all. Drives me mad sometimes. We were having a conversation today because a dear friend of ours has been diagnosed; the nurse had said to him "if you have surgery first, you can still have RT later if needed." I said something like "that's flawed thinking; if you need salvage treatment, your chance of remission drops significantly."
John sat quietly for a minute or two and then said "so where does that leave me?" ... I don't know where he goes when we are at appointments but he ain't in the room :-/
There is always the exception - Ulsterman's met was spotted at something like 0.03!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Does seem quite strange deep down that I’m not being offered another PET scan even though we have one in the car park at Southampton now. My psa must be roughly 200. I think it’s because deep down he knows I’m not keen on treatment anyway. We are sticking to six monthly bone and CT only. Not even been offered full body MRI which I hear are good. My kidneys have taken quite a knock blamed on the contrasts and PET injections. Part of me likes it this way ( got the whole summer to enjoy ) but the other half realises I could just get very ill very quickly which is worrying me.
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Hi
Got my latest result yesterday, down from 0.22 to 0.19. next test in 4 months.
Thanks Chris
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Well it’s wandering around a bit Chris isn’t it ? But still relatively stable yeh. Easy to say don’t worry. Keep us informed ok
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Sorry it has risen a bit Chris. Let us know how you get on with the oncology nurse.
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Positive vibes being sent your way
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Bullocks - sorry to see this.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Sorry to see your latest result Chris, hope you get some more positive news in your telecon.
Arthur
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Hi Chris, just picked up this thread, sorry to read your PSA has been on the rise. You really don't deserve this cr*p mate! Stay strong & I hope things improve soon.
All the best. Steve
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Sorry to see this rise Chris. Still in the below 1 club though. Hope the conversation the oncologist nurse is positive
Bri
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Sorry you now have more to worry about Chris. Hope the appointment goes as well as possible
Good luck
Cheers
Bill
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Hi Chris,
Sorry to hear about your PSA rise. Any news like this is not what you want to hear.
Thinking of you both.
Steve x
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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You wonder where they come up with these ideas when there is a fairly clear statement if what defines BCR after prostatectomy. Ridiculous.
My GP signed off my 0.3 initial recurrence PSA as within normal range, hadn’t even looked at my notes!
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Originally Posted by: Online Community MemberWent to GP today for BP check. The nurse tells me I haven't got BCR until PSA has reached 1, that's why they don't scan until it gets to 1. Think it's time to change surgery.
Thanks Chris
The other year one of my surgery nurses heard me asking the receptionist for a blood form for my PSA test. The nurse said you don’t need to do a PSA test as you haven’t got a prostate. It really makes my blood boil
Bri
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I was told also that they won’t do anything until or if it reaches 1.0 but did not say anything about BCR.
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Six years ago today I had my prostate removed, three years ago today I was in the middle of salvage RT. Now, my PSA is on the the rise again and I will have a fancy scan in about a year. This was definitely not in the plan.
Thanks Chris
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Hi Chris
Sorry to hear this. Keeping fingers crossed for you.
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Any rise isn’t good Chris but hopefully it won’t start shooting off the scale anytime soon. I suspect the tel conversation won’t bring any surprises. Another test in 4 months?
Take care
Bri
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Doesn’t seem too bad Chris. Keep the faith
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Okay, breathe. I don't know where the nurse got a doubling time of <6 months from but I have just put all of your results for the last 2 years into the MSK calculator and your doubling time is 17.1 months with a PSA velocity of 0.1/year
On one hand that gives you lots of breathing space but on the other, that seems to me to be a very long time to wait for a scan. Perhaps it would be better for peace of mind to push for a scan sooner rather than later?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris, it doesn’t look too bad from where I am but any rise is worrying, it’s a case of where are the little sods and what are they doing!
Keep strong and ask Onco for that scan, I asked and got ignored, Onco booked one, and he got ignored by Scan team!
Don't let it get as bad as mine, through lack of help from Oncology team. (Mets in 22 places)
Chris.
Edited by member 04 Jun 2020 at 09:12
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Hi Chris, sorry to hear this. Hope you can get a scan organised to see what’s going on.
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Hi Chris
Hope this development doesn't cause you to much worry. Hope you get a scan to put your mind at rest and then hope the results are favourable.
Good luck
Cheers
Bill
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Ido4
I have got a bone and CT scan coming up in the next few weeks. Saw my onco today who came across as very anti pet and psma type scans at anything below a PSA of 8.
Thanks Chris
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CJ
I did bring up your type of situation where scans do not pick up anything. The scans are free and are a possible prelude to other things.
Thanks Chris
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Sounds like good news all around!
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Sorry to hear about the rise Chris but as you say it’s a slight one
What’s the trial you have been accepted for
Bri
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Rate of rise is slow which must be a relief mixed in with a bit of disappointment? The trial sounds interesting - the idea of giving a vaccine to someone that has already had radical treatment could be a game changer in the future!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Chris,
Sorry to hear about the rise but I hope everything goes well for you and the rate of rise remains slow.
I hope you manage to get on the trial and it helps you in some way.
Take care and stay safe during the lockdown.
Steve
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Sorry to hear that, Chris
Can you challenge or ask for an exception?
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Sorry to hear this Chris. Thoughts are with you ok. Still low figures !
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Hope this is the beginning of a downward slope Chris. Maybe the rises were/are infection.
Good luck
Cheers
Bill
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Sounds good Chris - going in the right direction
Arthur
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Hi Chris,
Good to hear that it's not racing away.
I do find that my PSA varies quite a lot sometimes. I really don't know why but if it is just a gradual rise then that can be very reassuring.
I hope this current trend continues.
All the best,
Steve
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I’m not surprised you are confused Chris. But PSA seems steady so that is a positive.
All the best.
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7 years ago today I had a trus biopsy, I didn't think I would be facing more treatment seven years later. 10 years ago my GP missed a PSA of 6.9. Twenty years ago I started with terminal dribbling.
Still here and still moaning.
Thanks Chris
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Hi Chris,
Life never quite seems to turn out as you expect it to.
In the Spring of 2014, I never expected to be told in June that I had Cancer and in March 2018, that it was now incurable.
You could have never imagined the operation you had to cure the Cancer would cause you so much trouble in the years that followed.
No one deserves the problems you've suffered over the years and I admire the way you've coped with it.
Whatever life has thrown at us, we're still here.
I hope you have a very Happy Christmas and better times ahead.
Steve
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Moan away Chris , you really have had it way worse than most with complications! I think the incontinence would have driven me insane. Thanks for all your input over the years. It means a lot to all.
Have as happy an Xmas as you can
Chris
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Long may you still be here Chris, moans and all!
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Hi Chris
Also glad you're still here I hav'nt noticed any moaning, just constructive advice, help and support as far as I'm concerned.
You have had to put up with more than most regarding side effects and complications and have delt with all the sh#t this awful desease had thrown at you admirably and have used your experiences to help and advise so many others on here.
I hope your PSA stays under control and wish you all the very best.
Many thanks.
Cheers
Bill
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When you are too ill to moan, that's when you should start to worry.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I suppose the antibiotics could have suppressed it a bit?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Chris,
I don't know how doubling rate works at different levels but over the last few years it looks like your psa is doubling in around a year. So in a year it could be 1.2 which doesn't sound big. I also don't know what other treatments they might offer. A doubling time of a year isn't normally classed as high as far as I know as it will take 5 years to reach 20 which isn't too high relative to some. So hope it works out. All the best Peter
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Still hanging in there Chris and still quite some time away from further treatment. Gave my blood today. Doesn’t get any easier does it
Bri
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PSMA scan an option Chris?
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Hey mate I get where you’re at regarding not bothering about psa anxiety. Mine is at 990 and a year since testing , and with 3 palliative courses of RT to spine and ribs to boot ! As you say it is what it is. People have died with a psa of 10 whereas I’m still kicking mostly ! But don’t panic ok. Make sure that psa is at a level where the scan will be fruitful and not wasted.
For what it’s worth I’ve not posted for a month and due HT jab this Friday ( the second one ). Yes a drop in libido but not gone. No function gone. Just the bl-** dy night sweats. Zero during the day. Only at going to bed and then waking. No bother really. Just like being in a hot country at present. I had no other choice left on the table and had to make the decision , but I guess I made it at last. My councillor said I wasn’t scared enough of the cancer because I felt so well all these years , but in the end I knew my back and breathing weren’t good and went for it. Day by day and week by week mate.
All my best
Chris
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Stan died with a PSA of 1.2, CJ 😥
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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That’s all I get all the time Chris — ‘ you look so well , !
I guess we should be grateful for small mercies. Congratulations on 7 yrs. My six yrs is June 15th.
Just goes to show that mostly this gets you in the end one way or another.
I can honestly say I don’t know how you’ve coped. Things have been so awful for you. I think I’d have caved in by now with all your issues. Hats off to you and for your selfless councel for others. Stay strong mate
Edited by moderator 28 Apr 2021 at 19:49
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It’s great to still have you here Chris.
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Happy anniversary! Wishing you many more!
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Many more years yet Chris 👍
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Here here Chris. Thanks for all the advice re strictures and Catheterising
Happy anniversary and here's to many more
Cheers
Bill
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Eventually I got accepted onto the Rhovac vaccine trial. I had my first injection this afternoon but being a double blind trial I don't know if I had the vaccine or just water.
Thanks Chris
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That's a shame Chris, is there any change in the velocity? Your past figures are a bit all over the place!
Have you thought about PSMA scans? If you have a recurrence in the prostate bed you could perhaps have local ablative treatment?
Did they treat your pelvic lymph nodes with the SRT? Maybe scope for further RT there too?
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Sorry to read this Chris. I guess you’ll know more after the next scans.
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I had the same issue, total incompetence!
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Dear God - what hope is there?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I've seen two cases of this just recently.
One guy was several years after RP, and proudly saying his PSA was 0.7 (and 0.4 the year before) and his GP says it's fine as it's <3.0
Another where a guy has had a RP and his PSA is going 0.14, 0.16, 0.18, and his GP says nothing to worry about, again because it's a long way below 3.
I was in a meeting with a urology consultant and several patients last week, and one of my comments was most prostate cancer patients who are more than a month into their diagnosis will know more about prostate cancer than their GP. The consultant laughed and said how true.
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I had a similar situation with the nurse at my Practice!
He kept telling me it was a pass i.e below 3.0!
Initially wouldn't give me the actual number over the phone. When I pressed him, he eventually did give me the number, except he had no idea what the "LESS THAN" symbol was!! Absolutely pathetic, it's really worrying, what do they teach at school and nursing training!!
I did take it up with my Doctor.
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I’ve shared my experience before. A couple of years ago I was at the GP reception asking for a blood form. The nurse in the background said I did t need a PSA test as I didn’t have a prostate
Beware….they walk amongst us
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Merry Christmas Chris, hope you are well and have a nice time over the festive period.
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Merry Xmas Chris.. whats the story behind the collie pup avatar?
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Francij1
That is Billy our Border Collie. We told our daughter we were going for a Xmas tree, when we got to the farm there were around six puppies and she picked him. He is predominantly white rather than the normal predominantly black. Now 12 years old, he helps keeps me mobile.
Thanks Chris
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I’m still glad you’re here mate , but sad we both still have cancer. I’m 7 yrs in June !! Stay well
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Best wishes to you both keep moving forward you are both an inspiration to all off us with this terrible desease 👍
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Good luck. I just re-read your profile it's quite a story. All the best, Peter
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I think like everything else, it varies between oncos / hospitals. John was told by Mr B that he could have SABR if one or two hotspots were identified, others seem to be told that 3 is the max. Then there was that guy who posted that he has had a number of spots zapped, plus had a rib and a vertebra removed and I think a leg bone? I wonder if he is still alive?
Edited by member 17 May 2022 at 21:48
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Maybe this can help you?
https://ascopubs.org/doi/full/10.1200/edbk_239041
Best,
Lola
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I'll add something: I've read that having five spots or less is considered "oligometastasy" and can be treated, but as Lynn said above, I guess it depends on the doctor, hospital, patient, location of the spots and criteria in general.
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So sorry I can't help you as I don't think my hub's report in Spain is any good in this case.
I encourage you to go as far as "impossible" and I am confident you'll finally get to be properly treated, as you deserve and are entitled to. Apparently you happen to have come across an insensible group of professionals, but I know that, luckily, NHS works pretty well.
Looking forward to some good news from you soon.
Best,
Lola.
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Unfortunately Chris's issues are widespread in the NHS...
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I'm afraid everywhere there is a lot going on.
At least, Chris has now a formal evidence that he's being mistreated and can fight with a strong argument.
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Lola, hope the treatment is successful for Paco.
Thanks Chris
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So sorry, Chris. You were looking forward to taking this trial, but heaven knows what the outcome would have been. On the other hand, as you say, your ignore whether you were in the blind or not. This given, now I wish you were included on the placebo🤷♀️Do not get frustrated.
XX Lola
Edited by member 29 May 2022 at 21:51
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Sorry to hear this Chris. Hope you get to find out soon and hope they can get a further treatment plan sorted for you x
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I think this is no great shock to you as you already suspected that you were either on the placebo or that the vaccine was not working for you? Disappointing for the trial team though and for future patients 😕
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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My wife’s dentist drives a Maserati. Not being flippant mate I’m sorry. I packed in Denplan when I thought I was going to be dead in a year. But my dentist kept me on and has done work very reasonably.
Even when I was with Denplan and needed a root canal it still involved significant cost for lab fees etc
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Hi Chris, I am with Denplan and had a root canal a couple of years ago - wasn't charged any extra for it. Our dentist has continued to see us both (in a full hazmat suit) for routine checks ever since they were allowed to reopen in summer 2020
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I’m with denplan and am not charged any extra ,but they do offer different plans that only offer checkups but not major dental
work so maybe you are on one of those plans . I pay £31 a month .
Hope this helps
Debby
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Hi Chris
Just had a quick look at the dentist section on Denplans website and it seems like root canal treatment may be optional and at the discretion of the original dentist that signed you up. If that was the case then they should have told you that root treatment is excluded and priced accordingly. Do you have any of the original documents from when you signed up. You should have a strong case.
Root treatment can be technically challenging and time consuming. The dentist may not feel confident doing it and/or feel that it is not economically worth while, so denplan gives them this options to opt out. But it should be clearly stated.
(cut and paste from denplan dentist section)
What does Denplan Care include?
Dental check-ups (as clinically necessary)
Dental hygiene visits (as clinically necessary)
Dental x-rays
Necessary fillings
Necessary extractions
Periodontal treatment
Preventive dental advice and therapy
Crowns, dentures and bridgework (excluding lab fees)
Root canal treatment (optional)
What’s not included with Denplan Care?
Lab fees / prescriptions
Any treatments you've excluded from your patients' plan contract
good luck and hope that helps
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When I had mine they did an intense scan in the middle bit and a quicker scan everywhere else..
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I’m sure it will be fine ! Normally head or neck to the groin and hips ! Good luck
User
Good luck, Chris. I'm sure it'll be fine, you'll see. Moreover, in case st came out, so many new an varied treatments are available these days. In We are bound to keep sharing our fears, sorrows and joy here for good.👍
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Always nice to hear from you Chris. I guess it’s good that only one item showed up and they are looking at it as curative. You’re our ultimate soldier so good luck 🤞 from me
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Hi Chris
Hopefully they found the only culprit that's producing the PSA and that they can knock it out with focal treatment.
Good luck
Cheers
Bill
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That sounds like good news to me! Will be an interesting PSA result when you get the results...
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You've hit the nail , Chris. That's the way many of us are feeling. To be honest, I had the impression that over the last three or four years a gigantic step forward had taken place in terms of image and tracers. We were welcoming what we thought to be the solution for tiny spotted mets and, thus , go for an early treatment, as well as keep watchful to possible unseen malignant cells at the very moment they became visible. Kind of disappointing?
BTH, would you happen to come across some manual for dummies trying to understand tracers, TAC, PSMA , gallium, f16, bone scan, and life in general, please, make me aware.
Best wishes from my Spanish corner over the ocean, facing America.
XX
Lola
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"Lyn,
This is the exact copy from my appointment letter , "NM F18 half body PSMA PET/CT scan" I am fairly confident I had the F18 fluciclovine tracer, my PSA was 1.6.Presumably it was not a PSMA scan."
You should ask your onco in case I have got it wrong about Axumin but my guess is that you had F18 PSMA 1007 not fluciclovine. I don't think they would have written on the letter that you had a PSMA scan if you didn't.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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"Not sure if I’ve asked this question before but is there a chance that some cancer cells are PSMA reactive and some aren’t?"
Others here know more than me about this but I think that you are either PSMA+ or you aren't. Some clusters may be too small to show clearly which then leads to equivocal scan results and doctors comparing the images from MRI, bone scan and PET scan to form a view?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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"I have just had it confirmed that the tracer was the 1007 as you said. Is there a better scan that may pick up things the 1007 may have missed ?"
No, comparison trials suggest that Ga68 and F18-1007 are just about the best you can get and fairly equal. 1007 may be slightly better at picking up activity in lymph nodes.
I am surprised that they are saying there is a risk of bowel damage - SABR is so precise. Maybe they are just doing the usual worst case scenario thing?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hope it all goes well Chris.
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It is advanced with spread to lymph nodes only at the moment Chris , so technically curable although the lymph system is a super-highway. That is I only had 2 lymphs in abdomen but now one up in shoulder and one near my lungs. Hopefully after zapping your psa will stay down a good while. Insurance wise you are good to go. They normally happy with spread to local lymphs only. It’s when the bones get involved …….
Good luck friend
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A nice cool room in the middle of a raging heatwave. As they say, every cloud has a silver lining. I hope the SABR does the trick. Chris
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Hope it all goes ok Chris. I ended up with 3 squares of red skin when I had my spine and ribs done , but it wasn’t sore and went away in the end. It did cause some internal issues with Oesophagus and lungs etc but yours is down below so to speak. I got piles 2 weeks after for the first time in my life but that sorted too. They gave me a bottle of Morphine in case I got tumour flare but that never happened either. It has been opened for the odd dabble though 😊
Good luck
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Thought the matron always said it can actually go up because of cell death releasing PSA?
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It may just be a bit too soon; PSA isn't really a reliable indicator of the effectiveness of RT in the early days after treatment so it's possible that the same applies to SABR. Alternatively, it may be that the node that was zapped is not where the PSA is being generated
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hope it starts to drop Chris. Logic tells me if the scan did not reveal anything else then surely the lymph node is generating the PSA. Either way fingers all crossed for you
Bri
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Hope your PSA starts to fall soon Chris.
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That must take some weight off your mind. It's great to have a back-up option of trying again plus four interesting points.
If I can repeat them 1. The test was too early. 2. Psa lowest at 6 months. 3. The slower fall without hormones. 4. That they'll try again.
Let's hope it's fine. Peter
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Originally Posted by: Online Community MemberThanks guys, went to see my oncologist today, he said the blood test was too early. He also said PSA will fall slower because I had RT without HT. Next appointment 3/4 months, but he expects the lowest reading to be in six months time. What did surprise me slightly was if the PSA does start to rise and hits 2.5 we would repeat the process again.
Thanks Chris
Relief!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good news Chris
Cheers
Bill
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Originally Posted by: Online Community MemberThanks guys, went to see my oncologist today, he said the blood test was too early. He also said PSA will fall slower because I had RT without HT. Next appointment 3/4 months, but he expects the lowest reading to be in six months time. What did surprise me slightly was if the PSA does start to rise and hits 2.5 we would repeat the process again.
Thanks Chris
Hi Chris,
Really interesting point that PSA will fall slower because you had RT without HT..
I have a daft question; what is the optimum time to test PSA post RT, and what is it about RT that kills cancer cells?
Regards,
Kev.
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Sounds positive Chris 🤞
Kev T they usually test 6 months after RT. Having said that it took about 2.5 years for my PSA to hit its lowest point after RT
Bri
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Reassuring for Chris and for many others others here, like mi oh.
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I'm no expert. My basic understanding is that EBRT destroys all cells it comes into contact with. The important thing is that the healthy cells killed will regenerate. For some reason, which remains a mystery to me, the cancerous cells won't. Once they're dead they're dead in other words.
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As long as I know radio damages DNA. For some reason I ignore, malignant cells are not able to recover from that damage and over time they will die whereas the normal cells can fight and defeat the harm caused by radio.
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Andy , brilliant and interesting reply. In my situation the SABR treatment was applied to a lymph node after surgery and salvage RT , the latter was 4 years ago and no HT.
Do you have an explanation on how RT works on single or multiple sources.
Thanks Chris
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Sorry to see your PSA has risen Chris. Time for another scan perhaps?
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Not what you or any of us wanted to hear. Fingers crossed it's all those ruptured PC cells
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Definitely not what you wanted to hear.
Can you get another scan? Would show if the sabr had had an effect? Possibly show if it's popped up anywhere else..
I guess realistically you now have 2 choices: Do nothing favouring quality of life or chuck the kitchen sink at it with chemo and intermittent HT..
Dr Qwon in the state's is the only guy I regularly see posting on aggressive treatment for metastatic PC. He is a fan of chucking the kitchen sink at it..
As you are now 71 maybe the do nothing is preferable as you still have chemo and HT in the bank?
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Sorry to hear that, Chris, but knowing about so many cases worse than yours doing well, you better not fret too much. As Francij said, you have two options: doing nothing or throwing the sink and use the many and new weapons that luckily are now available.
In my honest opinion, a PSMA SCAN should be the first step, and then, decide.
Good luck xx
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Sorry to see this Chris. Like the others have said the PSMA seems the best thing.
I said it myself the other day that further treatment isn’t really the way we would want to go, but how lucky are we that it’s there as an option 🙏🏼 Fingers crossed you will get a plan on your next appointment and get it sorted out x
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Chris, there isn't much I can add to your knowledge in this regard, but just in case, I'll tell you about my hub's recent procedures and results, since there's some similarity .
His PSA after Da Vinci was ok, but along five years post surgery it was slowly increasing. When it got to .33 uro referred him to onco and in a few days he had a PSMA SCAN (from the pocket). A pelvic node and one seminal vesicle's bed lit up. He was then put in HT followed by 30 IMRT sessions to the two spots shown and to the whole pelvis as a prevention, at the same time he continued HT. After two or three months in HT alone, a CAT SCAN showed no lesion in the node and some shrinking in the other spot. Now, one year since this procedure started PSA is .006
I can see you're reluctant to HT and the choice is up to you, but maybe you could consider having it?
I insist, try to get PSMA as soon as possible.
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"if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable."
Wouldn't it be shooting blind, to no visible target? The purpose of PSMA is finding the right place to aim the radiation... Just guessing.
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Originally Posted by: Online Community MemberElaine, thanks for the reply and thanks for the support you give to many of us on here. , At the last meeting with the onco we discussed the options going forward, if the first lot of SABR fails there would be a second PSMA scan and more SABR treatment if applicable.
I suppose it is the electrician in me wanting to understand the mechanics of what is happening.
Thanks Chris
Ditto Chris….the support I’ve had from you and the other guys and gals on here has just been unbelievable and something I won’t ever forget…especially your support and advice last Christmas…I would have been in a state without your response I’m sure.
I always feel the same that I want to know exactly what is going on 🤦🏻♀️ I’m starting to realise it doesn’t always work like that but will keep trying anyway.
Really best of luck for your next appointment and I will keep a look out for your updates x
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As you know you are PSMA positive are there any "early lutetium" trials about? Might offer a bearable Side effect profile and targeted radiation??
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As you know you are PSMA positive are there any "early lutetium" trials about? Might offer a bearable Side effect profile and targeted radiation??
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Hi Chris, Sorry to read that. If it was me I'd have the scan now and decide what's best.
Does hormone or chemo do any good with SABR. Could it set back any others you worry about. All the best Peter
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Ahh Chris, Im deflated just reading that post so can only begin to imagine how low your shoulders have dropped.My fingers and toes are all well and truly crossed for you.
Youve got this.
Fist pumping my chest at you mate.
Love and warmth.
Jamie.
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Hi Chris.
I'm very sorry to hear that.
Are you concerned that if you have the scan too early that it may show nothing, and then you won't be offered another one later, when you might need it more? Sorry if I've misunderstood your dilemma.
Take good care of yourself.
JedSee.
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Gutted for you CC - I think I would be going PSMA now but if it doesn't show anything, I would also possibly ask for more traditional scans just in case you are simply PSMA-
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I think by PSMA-, Lyn means PSMA negative. i.e. your cancer does not have the PSMA protein, so will not show on a PSMA scan.
However as you did have a PSMA scan which did show the cancer in July 2023¿ your cancer is almost certainly PSMA+ (positive).
If you were psma negative, the cancer would still show up on the older scans
I guess it is possible you could have two varieties of prostate cancer, though I'm told that is incredibly unlikely.
I'm sure Lyn will correct anything I have misinterpreted, I just wanted to get a reply to you ASAP.
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That's a bugger Chris.. Think Lyn has forgotten you have already had a PSMA + scan.
Think I would want another PSMA scan, it would certainly show if they hit the right lymph node with the SABR as that should be crispy after SABR.. May flag some other targets too.
Ask your ONCO about the bullseye trial for early use Lutetium he may have preliminary info on how successful it has been at avoiding HT.
https://clinicaltrials.gov/ct2/show/NCT04443062
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Sorry to read this Chris. Hope you can get the scans you need and find out what is going on x
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Franci, I will ask about the trial. I was discussing the 177 treatment with my insurance company and they also said they would not cover it because I had not had some treatments.
Elaine, getting the scans should not be an issue, it is just trying to get one at the optimum time, thanks for your reply.
Thanks Chris
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Hi Chris
Sorry to read your thread. You can get Lu-177 early privately in Finland, India and Germany if the trial isn’t an option
Good Luck
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No, I was thinking that perhaps the lymph node was PSMA+ but that other mets weren't picked up because they are PSMA- ... I didn't know that you couldn't have + and -
I think if there is a worldwide shortage of Lut177, you will need a plan B anyway so best to get the scan and understand whether the SABR worked, in which case you have other mets and should perhaps bite the bullet and go for systemic treatment
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I had a PSMA scan prior to surgery which was clear but 6 mths later after surgery two pelvic lymph nodes showed up together at 0.5cm. My onco explained that was about as small as they can see and there is a good chance it is also in other local nodes. As I understand it, that's why full pelvic radiation and a course of HT is often recommended in such cases as they also need to kill off the invisible stuff. Best wishes.
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Wishing you the best Chris x
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Sorry to hear this Chris.
Hubby had scans after SABR, 2 new lesions shown.
So seems SABR worked, but systemic treatment now needed as SABR not possible on new mets.
Best wishes xx
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Claret, just looked at some Germany and India sites, I will have to look into what my health insurance covers. They all seem to have the requirement that you are castrate resistant and I don't know that. As Lynn mentioned there is a shortage of the 177 and I wonder what the travel insurance would work out at.
Lynn, thanks for the info , I didn't pick up on the - sign. An early scan makes sense to me, even if I delay treatment until after a further scan.It is the sudden rapid PSA rise that is confusing, unless it is death cry of the cells. I did notice the PSA of Mr fish had a rapid rise after treatment.
Jellies, I don't think the full pelvic treatment was considered when I had salvage RT. In hindsight perhaps the addition of HT with SRT would have been beneficial.
JayneP, thanks.
Thanks Chris
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Actually I do it all in my head, which gives less reason to trust my opinions.
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Sorry to read this Chris, I feel gutted for you. I hope you find a way forward soon.
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Ido , I had a very informative conversation with my oncology nurse yesterday. I know the nurses have alot more time than the consultants but without having to ask she ran through alot of information my consultant didn't want to answer.
I have a private sector meeting with my NHS consultant next week to discuss options that the NHS may not offer.
Thanks Chris
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Hi Chris
The Docrates Hospital in Helsinki do private Lu-177 even if hormone sensitive ( if they consider it appropriate) However I think it’s out of pocket expensed only
Good luck
Originally Posted by: Online Community MemberClaret, just looked at some Germany and India sites, I will have to look into what my health insurance covers. They all seem to have the requirement that you are castrate resistant and I don't know that. As Lynn mentioned there is a shortage of the 177 and I wonder what the travel insurance would work out at.
Lynn, thanks for the info , I didn't pick up on the - sign. An early scan makes sense to me, even if I delay treatment until after a further scan.It is the sudden rapid PSA rise that is confusing, unless it is death cry of the cells. I did notice the PSA of Mr fish had a rapid rise after treatment.
Jellies, I don't think the full pelvic treatment was considered when I had salvage RT. In hindsight perhaps the addition of HT with SRT would have been beneficial.
JayneP, thanks.
Thanks Chris
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I think the international supply issue will be affecting Helsinki - not sure how long it might take the company to build two new production centres? Also worrying that both production centres are to be built in the USA as apparently the Lutetium must reach the hospital or clinic within 5 days of being made.
It seems Lu177 is not a realistic option for men with PCa at the moment
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Claret,thanks for the info.I see my oncologist again on Thursday,so will hopefully discuss options.
Thanks Chris
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Chris, just let me tell you st: my husband is coping with HT pretty well. Although he's a professional complainer, he only moans about occasional tiredness and some awakenings along the night. Shouldn't you reconsider going for it, if offered?
Best,
Lola
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Lola, thanks for the reply and your experience it is appreciated. I think all of us would prefer a curative pathway rather than a controlling pathway. I do sway between I am not having HT and I don't want HT. So far in my discussions with the onco I have said I don't want HT, but never point blank refused it.
Seeing him in the next couple of hours.
Thanks Chris
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I'm also expecting some news from Chris. 🤞
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When I had my PSMA PET with the GA infusion, it was "whole body" With extra scanning in the pelvis.
Seems strange your ONCO won't specify an investigation on your knee explicitly. Sometimes I think they focus on "likelihood" and forget about their patients peace on mind!
The infusion will go everywhere regardless, they might as well take the picture while they are there!
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4 months seems a long wait. I was told by my nurse it was much less. Good luck at the Genesis Centre.
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Wishing you all the best for your results Chris
Cheers
Bill
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Fingers crossed for you Chris...
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Fingers crossed for you Chris...
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Fingers crossed for you. I’ve had a Gallium tracer a couple of times, no issues kidney wise.
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Not the best news, Chris. I'm so sorry to read that. There's a difference between the terms "treatable" and "cureable" and, emotionally, it's not easy to move from "cureable" to "treatable", but at least, it's confined to the pelvis area and many ways to deal with this f**** desease are available these days. I hope everything goes ok and you can cope with it.
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Sorry to hear that Chris. I do hope they find a way to keep you on the curable pathway. At least the decision is taken out of your hands and you are not presented with a dilemma.
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Sorry to hear this news Chris. I guess you have to go with their judgement.
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Sorry to read this, any point in having a second opinion ? Might give another perspective.
This disease tests our strength, and resilience doesn’t it.
Take care.
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Hi Colwick Chris,
I'm so very sorry to hear your news. I reallly hope they can sort it. What a roller-coaster ride you have had over the years. Keep us all posted.
Take good care of yourself.
JedSee.
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Lola , Chris B, CJ, Leila and Jedsee, thanks for your replies. The meeting yesterday was a bit sobering to say the least.
I just need to get my head back on track.
Thanks Chris
Edited by member 28 Apr 2023 at 19:04
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Hi Chris
You got through all the previous s*** thrown at you, I'm sure you'll get your "head back on track"
It seems you have no decision to make, unless of course you get a second opinion.
Best of luck
Cheers
Bill
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Hi Chris, There is a video on YouTube where the oncologist says the risk of burning the intestine with modern equipment is very low. He does emphasise in the hands of a good operator and he probably wasn't talking about retreating an area. Perhaps it's something worth looking into although I can understand you not wanting to take the risk. Peter
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Sorry to read this Chris.
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Is surgical removal out of the question too? Did he explain why it hadn't treated the lymph node successfully? Was it the difficulty of getting the ray gun passed your other parts?
As it lights up so we'll with PSMA is there no option for a leuticium trial??
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Ah, so sorry to see this CC. The trouble is, if you go for local treatment on the new node, more are just going to pop up somewhere else at some point. I think if you were my OH, I would want you to start systemic treatment now before any more spots have the chance to develop. Good news on the knee though - time to see a physio?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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If you have the option of local treatment (surgery, RT, etc) perhaps consider that with hormone therapy for 18 months too IE one last go at a long lasting remission.
Just conscious your cancer hasn't had a sniff of HT to date and combined with another focal treatment (Which has been shown to activate the bodies own immune response) may be enough to get you to 90??
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Sounds like a plan Chris.. Get your knee done while you are at it, my hip replacement has been life changing.
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It’s good there is a plan now Chris but I’m with you on not being excited about 6 months of bicalutamide and that this is difficult to deal with. Sending best wishes to you and yours.
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Hi Chris,
I wish you the very best of luck with your treatment. Sorry that the holiday plans have ben disrupted.
Take good care of yourself.
JedSee.
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Chris they put you on it prior to treatment to calm the cancer down and contain it at the size they have seen to make targeting better. You stay on it after as the treatment will annoy it and you may get flare. So it’s to to keep T away from an already angry tumour. I was fine on Bical for 11 months. No moobs or soreness although many men report it. Fatigue for a couple of weeks. Best wishes
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Chris. I didn't find the six months Bical too bad. The gynecomastia was the only side effect of consequence. I wish I had been put on Tamoxifen from the start. Three months after finishing the bical the moobs are still here but the tenderness has thankfully gone. Most body hair disappeared and that has not yet put in a reappearance. Six months passes fairly quickly in the wider scheme of things. I wish you good luck with the SABR. Chris
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Hello Chris, the onco's reaction regarding Tamoxifen is disappointing. Tamoxifen does increase risk of DVT, so not normally allowed if you've had a DVT before or at high risk, or coronary artery disease. It does cause non-alcoholic fatty liver disease in about 20% of the women who take it for 5 years to reduce risk of breast cancer recurrence, but that's at 20mg/day, which is a higher dose than is needed to prevent gynecomastia/mastodynia while on anti-androgens (such as Bicalutamide), and liver problems are easily checked with a liver function test in any case, so that issue can be picked up before it becomes a problem.
Moobs is usually more associated with increased breast fat tissue, which is different from gynecomastia (which is breast gland growth). The hormone therapy injections are more likely to cause increased breast fat tissue. It's less likely to happen with anti-androgens, but does happen sometimes. Tamoxifen won't do anything to prevent increased breast fat tissue.
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My understanding, based on members here over many years, is the opposite of Andy’s- breast growth is more common on bicalutimide than on hormone injections and is not always reversible. John got moobs on only 6 months of bical and they have stayed put. Very painful when the breast buds started growing and remained sensitive for quite a few months after he stopped the tablets. Fortunately, he had decent pecs so the moobs are not noticeable enough to upset him.
I don’t know why so many doctors and consultants play down the side effects of HT.
Our NHS trust will not provide tamoxifen or RT to the breast buds.
Edited by member 26 May 2023 at 23:01
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Tumeric helps me I am sure, just not as much as the hip replacement did!
I may go on about this but a combo of no breakfast (16/8 fasting) and avoiding bread and potatoes has worked wonders for me. More than 2 inches off my waist and 10kgs lighter. 2 years later it's still off and I have lost the sweet cravings.
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Tumeric helps me I am sure, just not as much as the hip replacement did!
I may go on about this but a combo of no breakfast (16/8 fasting) and avoiding bread and potatoes has worked wonders for me. More than 2 inches off my waist and 10kgs lighter. 2 years later it's still off and I have lost the sweet cravings.
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Tumeric, apple cider vinegar, ginger and manuka honey help with joint pain.
I’ve noticed some improvement, over the las5 few moths. I also use my rowing machine and do some weights, I have some significant arthritis in hips and back, this really helps.
Hope this helps lads.
Leila
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Haha, of course you can, along with a bit of decent black pepper and sea salt. Served in newspaper.
Enjoy 😉
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Prior to my latest SABR treatment I persuaded my GP to allow me a pre treatment PSA test. PSA is up from 4.8 to 6.2 in ten weeks, but the rate of rise is slightly down.I finished my fifth SABR treatment yesterday.
A boring review of my SABR treatment more for my records. Planning scan with contrast, all went well in and out within half an hour.My treatment is to the precaval lymph node so the bowel empty/ full, bladder empty/full does not apply.
First SABR treatment on the table , they use the skin scanning to position me. A quick scan followed by the treatment,no issues.
Second SABR treatment, the first scan showed the bowel slightly in the target area, so off the table and a walk round, back on the table bowel still to close, abandoned the treatment and come back Monday.
So still second treatment on the Monday. First scan, bowel too close ,off the table peppermint tea and a walk round, back on the table and another scan ,off the table and another walk round, third scan okay, treatment done.
Third treatment, after not eating for four hours,on the table first scan no good, off the table and walk round, back on the table and two scans still no go, just about to go back on the table and one of the radiology staff are taken ill. Third time on the table and after three scans and some input and adjustments from the physicist who had been asked to attend , I finally got the treatment. Three hours after arriving I left for home.
Fourth treatment, nothing to eat for six and a half hours, on the table, two scans and off the table for another walk round. Back on the table three scans a bit of adjustment treatment delivered.
On Sunday while in the garden I tried to step up onto a raised flower bed and I pulled something in my left knee, because my choice of painkillers gives me constipation I didn't risk taking anything before my next SABR treatment.
Fifth treatment again nothing to eat for six and a half hours fortunately only one visit to the table. It took two scans and a bit of adjustment before the treatment finally went ahead.
I think the initial upset stomach caused by the bicalutamide has settled down, aches to joints seem worse. I see the oncologist on Monday for a post treatment review. Then another waiting game before we know the outcome
.
Thanks Chris
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Fingers crossed it's err 10th? time lucky! I guess the bical will make any future PSA results invalid until you come off it??
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Wishing you lots of success for the treatment Chris and really hope your knee gets better soon.
How long are you planning to be on hormone treatment?
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That’s good then, atleast you know you can come off it and see what the situation is if you were really unhappy on it.
Rob had prostap for 6 months, and he was ok on it really. I think because he started it straight away after diagnosis the whole thing was just very overwhelming and we felt more negative towards the HT. Of course it’s looking like he may be back on it again soon so feel we have to go into it with a more positive attitude 🤞🏼 I do keep telling myself that I’m just glad there are options.
Best of luck Chris x
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Chris you’ve been a rock to me over the years. If it’s getting to the stage you need HT then you know I always put QOL first. I had no choice in the end , but for you I’m hoping treatment works. But if I’ve coped this last 2 1/2 yrs then I know you’re the sort of guy that can cope too. Just sending you support is all 👍
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Hi Chris, this all sounds tricky but hopefully it will give a good result. Wishing you all the best with your SABR treatment.
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Thanks ColwickChris,
That treatment regime seems emotionally exhausting. I don't know how you're able to write about it so matter-of-factly. Big respect.
JedSee.
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Jedsee ,I hope you never have to see the radiotherapy staff ,but if it happens you will find they are the most wonderful people you could hope to meet, they made it so simple.
Thanks Chris
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Colwickchris,
I am humbled by the fact that, in the middle of all your trials and tribulations, you've taken the time to reach out to me (and others).
I wish you a very successful outcome from your treatment.
Best wishes always.
JedSee.
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Hi Guys, 10 weeks on from SABR treatment to a single lymph node and 10 weeks on bicalutamide. PSA down from 6.2 10 weeks ago to 0.32.
Presumably the bicalutamide is having the greatest effect. Saw the oncologist today ,next test and meeting in January.
Thanks Chris
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That's fantastic, Chris. Well done. So, now you can look forward to a quiet Autumn and a Bright New Year.
Best wishes,
JedSee.
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That's great news Chris. The Bical is not a bundle of laughs but at least you are already nearing the halfway mark. Hope you have managed to avoid breast budding. Mine kicked in around the 10 week mark. Chris
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Great news Chris, I’m really pleased for you.
Dere
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Fantastic Chris. Genuinely chuffed to read this my man.
Jamie.
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Lovely news for us all Chris
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Great news,Chris. I'm really happy to hear that. I've been wondering how you were doing. I appreciate your update.
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Chris, the first time I noticed this phenomena was when I brushed a nipple when passing through a door and it hurt (it was a big enough doorway, I was just clumsy). On examination I could see both nipples were slightly raised and I could feel a hard area just behind it. My nipples gradually became more raised and tender but by this time I had managed to get a prescription for Tamoxifen to keep it in check. If you look up gynaecomastia you can get a bit more information on it. I imagine you have a much better idea how your nipples should feel than your Onco. I'm now nearly six months post Bical and my breasts are just about back to normal. The tenderness went away after a month or so but the hard lump under the nipple has been slow to dissipate. As for the wet polo shirt I don't think I've ever experience that 😀
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That's great, Chris.
Happy to hear that💪🏼👍🏼
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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👍Good luck in 10 weeks time
Cheers
BILL
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Great attitude Chris, onwards and downwards!
Derek
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Good news Chris. Moan away mate. Just enjoy Xmas now ok 👍
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Great that you are off the Bical Chris. It does have a bit of a long half life, so it hangs around in your system for a while. My nipples took about 2-3 months to completely lose their tenderness and about another two months to lose their hardness. Fingers crossed for the next PSA
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💪😎
Best wishes, Chris.
JedSee.
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Ten years ago today I had my one and only TRUS biopsy. I have had lots of treatment,still not out if the woods,but still here.
I happened to look at my last PSMA scan today and noticed that it says, "No abnormal PSMA uptake within the prostatectomy bed."
Presumably the "very educated guess" of SRT to the prostate bed was correct, pity the cancer had already gone elsewhere.
Thanks Chris
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Peter, I was told 7 years ago if they found anything with a PSMA scan salvage RT would not happen and it would be straight onto HT. I think for some of us we have moved on from that and a limited number of areas outside the prostate bed would be treated at the same time as SRT. That may not be the case with bone spread. Three years ago I was waiting for my PSA to reach 2,4, 6 or even 10 before going onto HT, again attitudes changed and I have had two lymph node tumors treated.
Probably another post code lottery.
Thanks Chris
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Now eight months from SABR treatment to my second lymph node and ten weeks since completion on bicalutamide. I had my PSA yesterday which is now 0.44, so down from 6.3 before SABR but up from 0.32 while on bicalutamide. I don't think there are many people on the same treatment path so hard to understand what it means.
See the onco in a couple of days.
Yet again my GP practice reports it as normal,no further action required.
Thanks Chris
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Clearly not the news you were hoping for Chris. Let's hope the SABR is still doing it's work on the treated node and that PSA will drop. You don't want to end up having to play wak a mole. Fingers crossed.
User
May just be a small bounce Chris since coming off the Bicalutamide and hopefully will stay steady.
User
I don't think the value on Bical is relevant, the PSA test in 3 months is the one to watch. Fingers crossed for that one!
User
Here's to no further action required CC.
Hope and warmth.
Jamie.
User
The RT may still be working Chris. Be good to hear what Jamie has to say about it. But fingers crossed all is good
I am still waiting for clarification about that lymph node 😡
Take care
Bri
User
No one ever likes to see a rise Chris but hopefully it’s just like some of the other guys have said and just a bounce that will settle. Best of luck for your next test x
User
Hi, so saw the onco yesterday, he said it would have been better if the PSA was 0.1 but 0.44 was better than it being 1.
He said he has never seen cancer remain in lymph node that has been treated with SABR. He says bicalutamide is out of the system within 2/3 weeks, unlike injections that take longer to disappear.
He expects we will need further PSMA scans but wants to wait four months before the next PSA test and the scan would depend on velocity rather the level.
If it wasn't for the suprapubic catheter life would be almost normal.
Thank you all for your support.
Thanks Chris
User
Originally Posted by: Online Community MemberOh, so you (he) mean "between that X's post and my post. I got it like "the conversation between Chris and Lola". My misunderstanding. I'm afraid I need to improve my comprehension of English.
Thanks, Jeff.
Have a nice evening.
Lola
Lola , perhaps it is me who needs to improve my English, in hindsight I can see it was a little misleading. Someone had used the quote reply to duplicate my post and added some dubious links into. My apologies for the confusion, I am always grateful for the support you and others have given me over the years. Hope we are still friends 🙂.
I left my phone at home this afternoon,so have only just seen the messages.
Thanks Chris
Edited by member 12 Feb 2024 at 16:55
| Reason: Not specified
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Blimey Chris!
You have been through the mill!
Hope you get sorted soon and things settle down for you.
I'm no medic but your minute PSA rise could be attributed to a number of things, and at a guess recent trauma may have played a part ?
Best Wishes
Luther
User
Sorry to read that you are still having problems Chris but glad that it is not more serious, and may at last be getting sorted out for you both.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Gosh Chris
I'm so sorry that all sounds terribly awful. Actually worse. You brave guy !! I agree with Luther that all that pulling and pushing etc cud be the reason for that rise. And it's only one rise. Hang on in there :-)
User
Ouch ouch OUCH!!!
So sorry you've had all this trouble Chris. Hope you get it sorted soon
We can't control the winds - but we can adjust our sails |
User
Chris, you tell an awful story with such humour and even temper.myou must have been in agony at times. I do hope you are getting to the end of it. Thinking of you and hope for a resolution soon.
User
2nd attempt. ..thought I'd posted once but not here.
Anyway, my legs are platted reading your post Chris...what a time you have had. As you know I also have a bladder neck stenosis and literally changed my mind regarding the op at the last minute...
I hope they get things sorted for you soon.
Hopefully the PSA will drop down by yiur next test
Bri
User
Sorry to read of all your troubles Chris psa is still well down though hopefully just a blip all the best for November 9th Andy
User
Hi Chris
You really have had a rough deal - I am sorry to hear of your suffering.
Wishing you all the best on 9 November.
Kind regards.
User
Hi Chris,
My heart goes out to you on reading about your horrific experiences over the past few months.
It has to be one of the most shocking stories I've read on here.
How you keep your sense of humour is beyond me, but thank God you're able to retain it - and your fighting spirit.
I felt I just had to reply, because your story really struck a chord with me
Your experiences took me all the way back to my darkest days in 2005.
Within days of having my very first PSA test (it came back at 182) in March of that year, I was having a biopsy done under general anaesthetic by a urologist.
I should have been home in six hours, but it was 7 days and six hours before I was able to leave hospital.
Everything went wrong, and was made far worse by neglect.
Through the first three days of agonising pain, none of the staff would listen properly to my complaints about something being wrong. I knew that the catheter wasn't functioning as it should. Time after time I was ignored.
By the fourth day, I was passing out and becoming delirious. My face was grey, and my pain was so bad that my wife rang the kids, telling them to get down to the hospital as fast as possible.
It was only through the intervention of two consultants (from another discipline) who happened to be visiting the urology ward that I was saved. Before I knew it the panic button was pressed, curtains were pulled around the bed, I was injected with morphine. and a team of nurses were helping the consultants clear masses of blood clots.
I will never forget the first words of the consultant who had spotted me. She said 'Never let yourself get into so much pain again'.
I can't remember answering, so must have passed out. My wife tells me I was delirious for a long time. Luckily, morphine blotted out those memories for me.
Chris, from that day on, my attitude to my PCa and its treatment changed forever.And of course, my opinion of that urology department, from consultant down to nursing staff is unprintable here.
The experience (and my anger) lit a fire in my belly which burns to this day. I vowed I would never again allow any clinician to treat me badly.
Looking back, I'm glad I experienced the worst side of care so early in my battle, because it made me 100% pro-active in choosing my treatment (and my doctors). It may even have helped me survive so long after the terminal diagnosis.
I have never had to raise my voice in anger, but have found that being very firm (but oh so polite) has seen me through the last ten and a half years with no further bad experiences.
Luckily I have an oncologist I have complete faith in, and after so many years we're more like friends than doctor and patient now. If only they were all as good.
You have suffered far worse than I did, and for much longer. If any good thing can come out of all your pain, it's that you can use the experience to make you stronger and more determined than ever to win through.
Wishing you a full recovery and some much happier, brighter, pain-free days ahead.
And - I hope to see you at The Mill next June looking 'damn good and worry free'
All the very best,
George
Edited by member 20 Oct 2015 at 11:48
| Reason: Not specified
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User
Chris
I am so sorry you are still going through such an ordeal. Hope you are around that corner now.
Xx
Mo
User
Hi Chris,
I'm so sorry for everything you've had to go through in recent weeks. No one should have to go through that. I really hope that they can sort things out for you really soon.
Look forward to meeting up with you and Dawn at another event very soon.
Take care.
Steve
User
Good grief Chris, George, are you two super-human or something? Extract of your bravery and tenacity should be fed to the England rugby team before the next world cup (not Wales, we was robbed).
My experience of NHS urology being on another planet is mild in comparison:
Getting appointments in the wrong order
Inability to read and digest my carefully typed (and succinct) history since TURP/LRP
Not having a clue how the b****y urodynamic testing machine worked
None of the three consultants involved at different times being able to give a consistent diagnosis and recommendation
Medical dictionary not having the word "stricture" in it
Being put on a maximum 12 month ("we are trying to get it down") waiting list for CONSIDERATION for an AUS nearly TWO years ago (no, I still have not heard anything).
My father, RIP just in time to finance me through the private sector
Oh, yes, and discontinuity half way through flow rate test when nurse walked into the room and asked me where the consultant was....
I think I may have to vote for Liane Wood (our Nicola Sturgeon) next year....
Tony
TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015. |
User
Thank you all for your messages and support it is appreciated. I have edited my original post and added the following.
Edited to add the following because I received a PM that contained this comment "considering having the da Vinci operation, rather concerned reading your catalogue of difficulties" , my reply back was "if I could turn back the clock would I go down the same path, 100 per cent yes " I would hate to think my minor misfortunes would put anyone off having the treatment that is right for them.
I would not suggest for one moment that my actual treatment has been poor, I think I was just unfortunate that my body did not do what is the norm. The actual Urology department is full of superb staff, right from the receptionist up to the consultants and the urology robot clinic nurses are all brilliant. The only let down was the procedure of getting back into hospital following the blood loss. Hopefully by mid November all will be back to normal and a distant memory.
I saw one of my urology robot nurses yesterday and she has said not to start worrying about the PSA rise, it is a very small rise but I will revert back to three month testing or less and not get passed to my GP just yet. She said the recent surgery and infections etc. could have a bearing on the rise.
Like I have said before I am in a better place medically than many on here and my plumbing problems are trivial in comparison to many of our community.
Not sure if this applies to all NHS trusts but we found out yesterday that at our hospital parking is free for all cancer patients. The urology nurse signed a form and within minutes we had a three month parking permit.
Thanks Chris
User
Christ on a bike.
I am never going to complain again.
L xx
User
BACK ON TRACK ???
Well after 90 days I am again bag and pipe free. Almost back to normal, continence just about regained, volume getting better, flow rate 20mls/sec.
Sildenafil having an effect and a stockpile of muse to use, struggled to get the applicator past the catheter.
Another PSA in two weeks fingers crossed.
Thanks Chris
User
at last Chris,
Some good news for you and Dawn.
Just one thing! Have you checked to make sure she has enough marigolds to attend to your every need mate?
OOPS!!!
Have you made sure that SHE has checked that SHE has enough marigolds to attend to your every need, and then some? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
atb to you both. Hopefully we can all meet up again soon.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Glad to hear your situation is improving, Chris !
Fiona.
User
really pleased for you Chris all the best Andy
User
Hi Chris
Glad to hear the catheter is out at last and you can now get on with your life.
Wishing you well with your forthcoming PSA test (mine is due very soon as well)
Kind regards
User
Phew...great news Chris
Bri
User
CB
It gets worse,during my last stay in hospital the nurse injected me with an anti clotting medication gave me some pills to take and told me to drink some water. Thirty seconds later I grabbed a sick bowl tried to move into a better position, Dawn was half holding the sick bowl I emptied the contents of my stomach which went in one side of the bowl and straight out the other side all over Dawn. Unfortunately I had not bought her any aprons, but at least she did have some gloves to help clean me up. I do love her.
Thanks Chris
User
Originally Posted by: Online Community MemberCB
It gets worse,during my last stay in hospital the nurse injected me with an anti clotting medication gave me some pills to take and told me to drink some water. Thirty seconds later I grabbed a sick bowl tried to move into a better position, Dawn was half holding the sick bowl I emptied the contents of my stomach which went in one side of the bowl and straight out the other side all over Dawn. Unfortunately I had not bought her any aprons, but at least she did have some gloves to help clean me up. I do love her.
Thanks Chris
Tutt tutt tutt. She only caught half of it in the bowl, shoddy.
That you love each other is the best news. Suspect she loves you more?
dave
Edited by member 21 Nov 2015 at 08:36
| Reason: Not specified
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Really glad for you Chris. You've been incredibly brave I think. Let's hope everything gets back to normal.
Chris
User
Chris
I'm sure Dawn has had far worse than you missing the puke bowl, some men will do anything to get us ladies to take our kit off!
Seriously though I am sure that was minor price to pay for having you tube, bag and fancy free again. May your onward recovery be swift and complete.
Hope to see you both in the New Year
All my best wishes
Xx
Mo
User
Hi Chris.Im 4 weeks post De Vinci(operation performed in Bradford)&go to have my first PSA blood test next week followed up by a review with the surgeon the week after.Reading your story makes me wonder just what is to come,i like everyone else ive read am overwhelmed by your bravery,resilience&humour in situations most would find unbearable.Im just trying to regain fitness,get more continent¬ do anything to jepordise the blood test,but its so difficult to know what to do.I guess the PSA will be what it will be.I was Gleason 3+4(T3a)on Right side/Lside benign, with 12% disease(PSA originally was 5.2).You are an inspiration to us all.I wish you the best of luck in your journey back to good health&look forward to reading further posts regarding your recovery.
Best Wishes.
Polarbear2.
User
CJ PB
The clip migration is quite rare something like 1 in 500. Not sure how you work out the odds for two migrating. Strictures are reasonably frequent but I have not come across too many guys with them.
I think were were all brave to have an operation or RT or Barchey etc when we did not feel ill, knowing we risked life changing side effects.
My follow up operations were no brainers as there was a symptom that needed sorting. Being looked after by a superb Urology team helped and I am sure I will miss them when I get sorted.
CB
You are in trouble.
Mo
There was worse that involved a nappy change and a baby daughter with wind and diarrhoea.
Thanks Chris
User
Hi Chris,
You've had a rough time of it recently. I really hope that things are a bit easier and you can look forward to a better new year.
Take care.
Steve
User
BACK ON TRACK ?
Two years ago today I heard those mind numbing words “ I am sorry to say that you have prostate cancer”. When I look at some of the recent posts I realise how fortunate I really am.
After twelve months of consistent 0.03 PSA results the 18 month test was a disappointing 0.06. Two recent PSA tests came back at 0.04 and 0.05 so at least a fluctuation and not a steady increase. My consultant is not concerned at this stage. Unknown to me I was carrying the pseudomonas infection for quite a while and probably had the 18 month test whilst carrying the infection, this may or may not have had an influence on the reading.
As regards the incontinence, I was almost dry 14 days after the RARP in April 2014, the Dilatation in August 2015 has left me incontinent, I have bad days and nightmare days, I have been using the sheath system “Bard care Spirit” not Coloplast /Coveen for the last three days and the difference is incredible. Not only is it better to leak into a bag it also improves the part of bladder retraining where you try to hold the urine for the extra minute. No major accidents to worry about.
My consultant pulled a face when I told him I was using the sheath system, but did accept my view that it is improving my state of mind and quality of life. Although the incontinence nurse said it was becoming the gold standard for treating incontinence the consult said urologists regularly see incontinence get worse for post RP patients as they come to rely on the bag. I will be having more bladder pressure test and cystoscopies in the next few weeks to see why things are not working correctly.
Bri, I did listen to your advice, but was persuaded things could be improved.
I have a stock pile of Muse in the fridge and now have the all clear to restart the ED rehabilitation.
As I frequently say to people at least I am still here to moan about things.
Thanks Chris
User
Chris
Honest and Frank post so thanks for that. I am sure you have had more crosses than enough to bare so I hope 2016 is onwards and upwards for you in more ways than one!
Have you been following Tony and his posts on the pump?
I will message you after Xmas re the Newark gang.
I trust D is well and enjoying sporting her marigolds?
Xxx
Mo
User
Hi Chris pleased for you on the PSA results hope the other improves as well enjoy xmas Andy
User
This afternoon I will be having my sixth general anaesthetic and sixth urethral procedure in the last 21 months. I say procedure as opposed to dilatation because I am expecting it to be more a removal of a foreign object rather than a stretch of the bladder neck. Following a slow decline from 12 mls/sec to 5 mls/sec in the flow rate, a cystoscopy two weeks ago restored the flow to around 11mls/sec, they could not get into the bladder and one of my consultants still wants to carry on with today’s procedure, I now have two consultants, am I being greedy ? I think the odds of finding a third migrated clip are about the same as Leicester winning the premiership and we all know what happened there.
It is now almost 25 months since my robotic assisted radical prostatectomy, I actually met my robot last week at an open day of our local urology department, the robot was not quite as big as I thought it would be. My PSA has slowly risen from 0.03 to 0.07 a few weeks ago, still good but I would have preferred it at a constant 0.03, the next test in July is eagerly awaited.
Following a trip to the GP about itchy skin we suspended the daily 100mg of sildenafil two weeks ago and the itching seems to have stopped. Although I cannot get an upright erection, with stimulation and no chemicals I can achieve about 90 per cent of the pre-op size, not bad for a “supposedly” non-nerve sparring Op. As I keep telling people you do not need an erection for vaginal intercourse and it is wonderful.
Continence has stalled at around 3-5 mls a day and I think I can live with that and I am not sure an AUS would, A be fitted at such a low leak level and B might still leak a little anyway.
If I could turn the clock back would I have surgery, one hundred percent yes. For those who might be considering surgery do not be put off by my experience, there are many guys who have had a more straight forward journey. At three months post op I had been back at work for two months, was completely dry and having fun getting around erectile dysfunction, At fifteen months life was almost back to normal until the urethra was punctured.
As I have said before I am still in a good place and far better off than many of the guys and girls on here. I admire the resolve and optimism you and your ladies give to the rest of us. Twenty five months ago in April 2014 one of our member’s husband had just been diagnosed with PCa, sadly we lost him earlier this year, how cruel life and this disease can be.
Thanks Chris
User
Chris ,
I hope that all goes well for you this afternoon. Your attitude and determination that you share with us in facing this disease is great. And I follow your updates on ED too with interest, having just embarked on ED treatment myself. Before dx I would never have thought I should be making comments like that. But being on this forum has certainly changed my outlook on life !
John
User
Fingers crossed for you Chris.
Hope all goes well
We can't control the winds - but we can adjust our sails |
User
Hi Chris
More General Anaesthesia? Just think of it as being like one of those Spa 'pamper days' where you get to relax for a while ( so I'm told).
Joking apart, sending you this by way of a brief message of support. Only sorry I can't be of more practical help.
User
Hi Chris
I can only wish you the best of luck. Boy have you manned up and been through the mill , yet managed to help and encourage others at the same time. Thankyou.
Chris
User
Hi Chris,
Hope the procedure goes well, you are due a good result. Tried to access your profile several times but keep getting 'Page not found'
Barry |
User
Hi Chris,
Hope everything goes well and things are much better for you.
All the Best,
Steve
User
Hi Chris..fingers crossed this sorts it at last for you
Bri
User
Only just seen this... Hope all went well Chris.
KRO...
User
Fingers crossed this time is the last x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris
thinking of you lovely man, hope this sorts out some of your issues at last. Its been a real tough ride for you and Mrs Chris.
xx
Mo
User
Hope all went well.
Thank you for all the help and encouragement you give.
Best wishes
User
Hope all went well, Chris and you start flowing at full rates again soon!
Paul
Stay Calm And Carry On. |
User
Hi Chris what a rough ride you have had, let's hope this sorts things out in the peeing lots front.
Keep posting with your upbeat words and support to others while you are going through the mill yourself, thanks
Chris/Woody
Life seems different upside down, take another viewpoint
User
Oh CHRIS
You have my sympathy, John was supposed to have the dilation treatment but it's been decided that an SPC will be needed for life so no point in going through more procedures. I think it's bearable if you truly believe it will make a difference, John had a CT scan recently, as you know, and it showed his prostate had infiltrated the bladder to such an extent that there is no point in more surgery.
On the other hand, I've got everything crossed that this latest op will improve the flow.
All the luck in the world
DM
User
Yet another disaster went into retention, back in hospital, they tried another dilatation without anaesthetic but bailed out, just waiting to see if another SPC is going to be fitted.
Hey ho such is life
Thanks Chris
User
Chris,
Naturally, we are all optimistic about our treatments and largely expect these will not involve continuing problems other than the usual side effects. You have been very unlucky for one reason or another and it says much for your strength of purpose that with the benefit of hindsight you would go through all this again.
We are all with you in hoping all these further problems with soon end.
,
Barry |
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Chris
Oh my I feel so bad for you, so many procedures, ops and now another retention. I really wish that you could just get something that would make your life easier.
You still stay positive and upbeat despite everything which tells me that you are one strong man.
I will be thinking of you
All my best wishes
Xx
Mo
User
Sorry to hear of your troubles Chris hope things improve for you ..All the best mate Andy