I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

A new phase

User
Posted 30 Sep 2018 at 19:08

Day 20 update. No physical side effects. Really surprised by this. Even had most of a bottle of red on Friday night and that did nothing apart from make me grumpy the day after. I'm grateful. Have even managed to temporarily wall off the "little me" worrying about poor outcomes for now. All I can hear is muffled noises from the basement where he is arguing with my Id :)

I'm looking forward beyond this now. I parked most of the dient and supplement stuff because it was too much to think about at the time but need to plan for post RT. I am going to check with the radiologists and see if I can back on Vitamin D, Pomi T etc. either now or at the end of RT.

The big question I have is going back on daily aspirin. I know I will get short shrift from my onco if I ask about going on the ADD ASPIRIN trial but want to do anyway so I shall say "I am doing this unless you explicitly tell me not to". Are there any contra-indications for aspirin during and after RT?

Cheers

P

PS - handed my final thesis draft in for review this week - thanks again to those who helped!

Edited by member 04 Oct 2018 at 12:21  | Reason: Not specified

User
Posted 30 Sep 2018 at 21:37
That's a good update. John also had no adverse effects apart from needing an occasional power nap at his desk in the afternoon - he carried on with the cycling, gym and rugby training throughout.

I have never read anything that suggested aspirin should be avoided during RT.

Well done for getting the thesis in :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Oct 2018 at 14:50

Pete

 

As soon as I was diagnosed in November 2016, my urologist put me on 75mg of enteric coated daily aspirin.  He stressed the need for the enteric coated tablets.  I'm not on a trial.  I took it throughout salvage radiotherapy.  I suppose I should check it's still ok, but I've had no issues from it - at least none that I know of.  He also put me on a daily Vitamin D tablet and a statin.

My SRT did not go as well as yours, so you're a lucky man (well, none of us are lucky, but you know what I mean).  Hopefully, you will remain side effect free, but I was told that the two weeks after treatment could be more difficult than when on treatment, so be prepared, just in case.

I've just spoken to one of the specialist nurses from PCUK.  Three months post SRT, I'm now soiling myself regularly.  I've soiled myself when in work, when out shopping, when driving the car.  If I break wind, blobs of mucus come out.  It's not fun and it's actually becoming quite distressing now.  I'm contacting my oncologist through my nurse for advice.  I've had problems ever since the SRT, but it is lately getting worse.

All the best with the rest of your treatment.

Ulsterman

User
Posted 02 Oct 2018 at 09:18
Thanks Lynn. I am going to ask forgiveness in the case of the Aspirin rather than seek permission :)

Ulsterman - I am going to do both Aspirin and Vit D. No chance of my surgery every prescribing statins for me :( Sorry to hear about your side effects. I have had three or four fart related hull breaches in the afternoon after taking the enema. Luckily I was at home but you are right, it is a pain in the arse. Did you see what I did there? :)

Quick question to all - Do I need to tell my dentist I have cancer from a cross contamination risk management perspective? I remember the hoo haa with dentists in the 90's with vCJD and instrument sterilisation so don't want to put anyone at risk. I suspect it is a non issue but need to be sure.

Just need to let off steam now. We were going to visit and old friend of ours dying from an agressive S4 lymphoma but I got a text last night saying it was not a good time to visit so I suspect things are getting worse and we may not see her again. Strangely, I feel more angry and upset over her situation than my own especially because there is nothing we can do other than be there. Every day, I hate this f*cking disease more and more with a bitter passion as I lose more people to it.

User
Posted 04 Oct 2018 at 12:20

I spoke too soon.

Latter half of my bowel motions hurt like hell now.

Also have discomfort in right groin.

Noticed it getting out of the bath. Being overweight, my organs squish up and I felt a twinge in the lymphodemic area to the right of Mr Stumpy in the fat pad.

Edit: Had a conversation with the review specialist. Am stopping the enemas. She reckons it is side effects from them and general tissue irritation from the RT. Nothing unexpected just rather sudden.

Edited by member 04 Oct 2018 at 16:05  | Reason: Not specified

User
Posted 17 Oct 2018 at 22:35

Hi all

Things have settled down now physically and mentally.

I have an onco review on Friday and was wondering what to expect / ask.

I’m going to raise aspirin again and possibly keto diet. Other that that I’m drawing blanks.

Cheers

P

Edited by member 17 Oct 2018 at 22:35  | Reason: Not specified

User
Posted 17 Oct 2018 at 23:13
Generally, these are quite short appointments just to check with you about any side effects from the RT that may be causing you concern. S/he is unlikely to be able to tell you anything about how successful it has been but as I think you are coming up to the end of the 6 months HT, you could ask when s/he expects your true PSA to start showing?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Oct 2018 at 06:38

Cheers Lynn

I understand that it can be quite a while after RT and they don’t draw blood for a good few months?

I know this is going to be a long and probably stressful wait but I am going to do my damndest  stay positive.

 

Edited by member 18 Oct 2018 at 06:42  | Reason: Not specified

User
Posted 18 Oct 2018 at 07:45

Originally Posted by: Online Community Member

Hi all

Things have settled down now physically and mentally.

I have an onco review on Friday and was wondering what to expect / ask.

I’m going to raise aspirin again and possibly keto diet. Other that that I’m drawing blanks.

Cheers

P

Interested in their response to aspirin and keto....

User
Posted 18 Oct 2018 at 09:53
I suspect it will be "unproven, don't do it!" :)

I will probably do it anyway :)

User
Posted 18 Oct 2018 at 11:48

Originally Posted by: Online Community Member

Cheers Lynn

I understand that it can be quite a while after RT and they don’t draw blood for a good few months?

I know this is going to be a long and probably stressful wait but I am going to do my damnedest  stay positive.

You should be hitting true nadir about 18 months post-RT but the HT can mess with this a bit. It's a while back now but I think the onco told John they wouldn't look at his PSA seriously until at least 3 months after the HT was out of his system.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Oct 2018 at 16:26

I had a review with a specialist nurse at the end of salvage radiotherapy and as Lyn says they are just checking how you are with side effects etc. and what to expect over the next few weeks. I had my review with the oncologist a month or so later and all he said was that the radiotherapy went to plan and asked how I was doing.

I will have my last PROSTAP 3 injection around 3/1/19 and my oncologist wants to see me in July as we will get a picture of my true PSA by then.

Like you I am nervous about this.

 

Ido4

User
Posted 19 Oct 2018 at 06:55
It’s a long haul isn’t it, Ian.

Made harder by the fact that each of us gets different treatment even if similar in situation, e.g. I never got an MRI or PET scan during my SRT prep, just a planning one. My onco never discussed the planning scan with me.

I’m going to just put my head down and concentrate on mental and physical well-being hit the next six months. Step 1 - lose the half stone I have put on with this bloody diet 😀

Keep the faith!

P

User
Posted 19 Oct 2018 at 16:59

Just had my end of SRT review with the Dr.

After that a faster zap as the imaging arm was playing up. They said that as I had done so well on imaging and placement they were happy to zap away based on markers alone. Got me out quicker!

One session to go on Monday!

Was asked about side effects and said "OK apart from a couple of dodgy days".

He said no more HT. I asked why (knowing full well) and he said with my pathology (T2C and just a PSA rise) the risks outweighed the benefits. I guess I can take that as a positive.

PSa and T check in four months.

Asked about aspirin and keto and he basically said "on your head but meat keto is a bad idea." I said it would be vegan / pescetarian vegan.

Final words - "sometimes SRT does not work" and neither of us broached outcome stats.

I am just going to ring the bell tomorrow, have a few glasses of wine and reflect on the fact that I have a good life and it could be a hell of a lot worse!

Onwards and upwards!

P

 

Edited by member 19 Oct 2018 at 17:03  | Reason: Not specified

User
Posted 20 Oct 2018 at 09:07

These highly technical machines break down sometimes. I suppose they are in constant use.

One of the machines next to the one I was on was out of action for days at a time. 

The machine I was on started the treatment lap and suddenly stopped about a fifth of the way through. A radiologist came in and said they were rebooting the comp so keep still! Apparently they are programmed to continue the treatment from where they left off.

I was told there was a 40% chance of SRT success.

You’ve done well, nearly there. Ring that bell, have a few glasses of wine and enjoy your life.

Best wishes, Ian.

Ido4

User
Posted 20 Oct 2018 at 12:15

Yea

I was told they run on the order of 40 sessions per day per machine - relentless!

As I said, my onco refused to discuss odds but the paperwork I got that kicked off the SRT said "only 30% of those with recurrence have clinical recurrence and mortality is only 6% of those".

EDIT: and SRT improves the odds even more.

Bloody confused but sounds better than a kick in what is left of my 'nads :)

Yup, one more day. Already had the wine (a lot as we went to a friend's birthday party) and am looing at the good things!

P

Edited by member 20 Oct 2018 at 12:28  | Reason: Not specified

User
Posted 20 Oct 2018 at 19:56

PP

On the last day I took a bag of M&S goodies in as a thank you too the fantastic staff. They let my wife into the treatment room to see the set up procedure then allowed her to stay in the control room and watch  the rest of the procedure. My last appointment was the last one of the day, the only person near the bell was the receptionist, he did stand up and clap. Like many have mentioned before you may miss all the people you have met on a daily basis for several weeks.

Best wishes Chris

 

 

User
Posted 21 Oct 2018 at 19:04

Hiya Pete,

I've been following your story with interest as I had a recurrence after prostatectomy followed by SRT. Just want to say what a good day tomorrow will be for you....ringing that bell. It sounds like you like a glass or two of red wine so I think I know what you'll be doing tomorrow night ! All the best for the future mate.

Paul.

 

 

 

User
Posted 21 Oct 2018 at 21:17
@Chris

I'll be there on my tod as my wife has to work sadly but I will ring that bell with gusto. I'll br hamding over a card and a huge tub of Celebrations with my thanks. I did talk to some lovely people there but the schedules were all over the shop so I never got to know anyone really well.

@Bestie

Yea, ringing that bell will be a relief and I will feel lost for a few days. Thanks for the kind words. I have a bottle of sulphur free red (I have an annoying vascular reaction to normal red) sitting there waiting for me. My fingers are cross for the future! How is your follow on from treatment doing?

User
Posted 21 Oct 2018 at 22:04
John took in a big basket of fruit on his last day but sadly, Jimmy’s doesn’t have a bell 😢
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 23:11

Pete,

Luckily my post SRT recovery has been quite symptom free except for a few strange spasms in my perineum and occasional mucosal discharge. I have my 6 month follow up consultation in three weeks time and I have to say I can feel the tension rising, particularly as the original appointment was cancelled last week. Overall though,I convince myself to stay relatively positive. I have changed my diet to bring a proactive aspect to the situation which may have little or no effect to the outcome, but I don't find it a hardship to maintain, in fact it has made my meals far more varied and interesting. We all do what we can in our own way. 

Cheers, Paul.

 

 

User
Posted 21 Oct 2018 at 23:21

All the best for tomorrow. I had mixed feelings on the last day as I was so looking forward to not having to make the journey every day but knew I would miss the laughs that we had. 

I am still in touch with some of the guys I met during the SRT and it's great to keep up with their progress. I hope that the treatment works for you.

Enjoy the wine!!

Kevan 

 

User
Posted 22 Oct 2018 at 16:28
Correction: when J had his RT in 2012 they didn't have a bell - I shall ask him whether he wants to pop down and ring it now! 😁
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Oct 2018 at 18:39
Hi all

Just letting you know I had my final treatment, left my goodies and card and rang the bell! It was a lot louder than I expected!

It has been a long 7 weeks and in many ways I feel humbled by the hard work and kindness of the Radiologists, the positive attitudes of the patients (many of whom are far worse off than me) and the support from this forum. Thank you all for the kind words and the occasional kick up the bum!

My goal now is to work on my positive mindset and my fitness and general health. The rest is in the lap of (the) God(s) (covering all bases there!)

@Bestie - that is all we can do. Cross fingers for you.

@Kevan - yes, I had mixed feelings to. Feel a little lost now but a couple of glasses of wine will do.

@Lynn - if the bell had not been installed, you could have had so much fun persuading your husband to buy a town crier's bell and run unannounced into the middle of the treatment room and start ringing it like mad!

@Mr Angry - you are channeling your inner Leslie Philips there!

User
Posted 22 Oct 2018 at 18:57
Nice one Pete!

All the best for the future!

Best Wishes

Luther

User
Posted 23 Oct 2018 at 07:49

Great that the treatment is now done. You can move on with your life again.

Enjoy it.

 

Ido4

User
Posted 26 Oct 2018 at 10:02
Cheers Ian

Quick question all - yesterday and to a lesser extent today felt / feel really low - kind of deeply numb rather than upset or anything. Is that common after finishing RT?

P

User
Posted 26 Oct 2018 at 10:20
It is a known phenomenon in cancer patients - Macmillan has a leaflet about it that you can probably download. I think the theory is that while you are having active treatment the adrenaline takes over but once the RT finishes and the adrenaline falls, you are left with a sort of grieving void of “what do I do now?”
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Oct 2018 at 13:24

I did feel a abit down for a couple of weeks post SRT, and so did a few of the other men having treatment around the same time as me (I subsequently saw them months after our treatment ended) Some agreed that it was the time spent in a positive environment whilst receiving radiotherapy,from excellent staff and fellow PCa, and other cancer patients and their families. Also life gets back to 'normal' which is,after all, what we want but nevertheless feels strange. You'll probably feel better and less numb after you've adjusted Pete.

All the best,Paul

User
Posted 26 Oct 2018 at 15:35

It is normal to feel like that. I attended a Maggie’s course every Friday for six weeks straight after radiotherapy. The clinical psychologist on the course team said that when treatment finishes it is almost like bereavement. You go from daily attendance to a clinic where you get lots of attention, where you feel like your doing something to kick the cancer’s ass, and you feel part of something. You also meet others in your situation. I got to know a good few people in the waiting room and we looked out for each other, chatted, joked, compared experiences.  When treatment stops you are no longer doing these things, even although the radiation is working long after the last session.

So you feel kind of empty and abandoned.

All normal feelings apparently. You are doing all the right things, you’ve had all the treatment you can at this point, you’re exercising, eating well and enjoying life.

Acknowledge the feeling and then move on!

Best wishes,

Ian

 

Ido4

User
Posted 26 Oct 2018 at 17:13
Thanks all

I suspected this may be the case. My Fitbit showed a significantly raised resting heart rate during the treatment period so I can see it had a measurable effect on me.

I just need to look after myself and move on.

Ian - I have a four week course booked starting in November similar to yours. it wil be useful as I have little niggling feelings like "am I strong enough to deal with what is to come?"

Press on...

User
Posted 05 Nov 2018 at 08:57
Still struggling a bit with the brain cells.

Week one was depression and week two was what I call biochemical anxiety in that I wasn't emotionally anxious on the surface but my brain had the wearisome symptoms dialled up to 11.

I noticed that my armpits were starting to smell a bit after exercise which suggests I am returning to (a new) normal. I wonder - as It is three months since the HT jab are there withdrawal side effects that can impact mental states?

I've also dropped my anxiety meds from 100 to 50 mg as they were giving me bad side effects at that dosage. I wonder if it systemic and cumulative withdrawal?

Press on...

User
Posted 05 Nov 2018 at 09:32

When are you starting the Maggie’s course PP?

I can relate to the keeping a brave front look but deep inside the mind is in overdrive.

It will be interesting to see how things go now you are off HT.

i will be having last HT jab 3/1/19 so will be a few months behind.

Hopefully others will come along with their experience. Lyn’s John came off HT but not sure how long he was on it.

I'm sure Lyn will update you.

Ian

Ido4

User
Posted 05 Nov 2018 at 10:14
Hi Ian

I start the course on Monday. Four Monday evening sessions in a row. Should be useful.

Yes, I am looking forward to being off HT. I read an interesting article today that says men are choosing QOL even if it adds risk. Not sure I will go that far but I will be damn glad when the side effects wear off.

One issue is that I am in a quandary - I need some decent time to myself (whilst not being zapped) before going back to work (it has been a very very hard last two years with PCa plus some very challenging jobs) and I have enough cash to do so but I feel guilty doing so and I know my OH worries about this. I think this is a big stressor.

Press on...

P

User
Posted 05 Nov 2018 at 12:15
I’m STILL on the QOL only route and am 3 1/2 yrs post op. Mentally it will always be tough , but I’m totally recovered from the surgery and have refused any further treatment until they actually see something somewhere. I’m G9T4 N1M0.

I’ve been living life to the full as well as working. Loads of treats and holidays for everyone and plenty of date nights for me and Mrs as everything is working and I’ve DREADED losing it. It might tip me over the edge tbh. Psa expected over 100 in January and maybe scans. Running the gauntlet but making the most of every day. I feel more scared of not living than the certainty of dying of this disease.

If life gives you lemons , then make lemonade

User
Posted 17 Nov 2018 at 12:10

I did not want to hijack another thread so here is something on micious adenocarcinoma which I have.

Half of my biopsy (3% volume) was mucinous. I have to be honest and say this scared the ship out of me but the studies are confusing but there appears to be some light at the end of the tunnel.

The list below suggests that it may not be as bad as first thought and that it is Gleason score at diagnosis and staging that are the key factors.

That being said, I feel quite angry that neither my urologist or oncologist saw fit to mention the potential risks associated with this. They have me flagged as a professional worrier so I wonder if they withheld this deliberately?

Worst case I have a variant that does not respond to HT or RT. Best case I am in the same boat as everyone else

 

 

Links removed - a bad idea including them - I am really sorry about that.

 

 

 A lot of the time I feel like the tunnel is bricked up :(

Edited by member 19 Nov 2018 at 20:59  | Reason: Not specified

User
Posted 17 Nov 2018 at 13:22
I think there is a difference between a) majority mucinous and b) elects of mucinous in a majorly adenocarcinoma. Majority mucinous gives off little PSA so is likely to be diagnosed very late, often when bone mets lead to fractures or SCC. Majority adenocarcinoma with elements of mucinous give off PSA and have more chance of being diagnosed with curative options. Also, if mucinous PCa is missed at diagnosis and the man opts for radical RT/HT his outcomes may be very poor whereas a man with undiagnosed mucinous events who opts for radical RP will probably do just as well as if he had pure adeno.

In your case, the mucinous element was very small and did not prevent you from being diagnosed at a point where curative action was still a possibility; the fact that it was spotted at all allowed the medics to plan for it. So in theory, your outcome should be no different to a man with pure adeno.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Nov 2018 at 13:42

Lynn

Thank you.

I was Dx with 50/50 at 3% tumour volume (G7 4+3 as  you know) with PSA of 4. This suggests that although prevalent it is not the majority. The 50/50 thing follows an annoying trend in my life - things that may or may not bite me in the Khyber are never black and white.

I am confused as to why they never mentioned it but I guess I can ask the question next time I meet.

It is a bit rough at the moment - both me and my wife are at that "it's been a rough road" stage and it does not take me much to wobble as you can see here. The hardest thing is learning to keep the wobbles internal to protect my family. Sadly I am not brilliant at that.

On a lighter note, thank you for your advise and support. I envisage you in a secret base somewhere like Bruce Wayne in his batcave checking a wall of forum topic monitors and diving in to help where needed Same thanks goes to all the other folks who have helped me too!

A wobbly Pete

User
Posted 17 Nov 2018 at 20:23
I wobble. The only people I know who don't wobble are my husband and my dad!

Not sure that your family need 'protecting' - I am sure they know that you are only human.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Nov 2018 at 20:41

Hi Lynn

You are right - I set very high expectations of myself which I know is not good. Unfortunately I have to deal with a lot of baggage on top of PCa and it affects how I react. Oddly I react worse to facing unknowns than facing death.

Still this link below makes things sound better. In 2014 the US decided that mucinous was the same as adeno and was to be graded according to pathology not getting a 4 + 4 by the mere fact that it is mucinous. Just going to have to ride this bad boy out I guess.

http://www.cdha.nshealth.ca/system/files/sites/116/documents/prostate-cancer-grading-2014-isup-concensus-conference.pdf

 

Edited by member 17 Nov 2018 at 21:41  | Reason: Not specified

User
Posted 18 Nov 2018 at 09:57
Further digging also suggests that mucinous by itself is not so bad but mucinous + signet cell/ring is very bad. My post RP path mentioned mucinous but not signet cell (there have only ever been 11 cases reported so I am sure they would be telling me!) so applying some CBT logical thinking:

I have a G7 (4+3) found early and BCR was found and treated early

My tumour volume was low (3%)

Mucinous was reported on my path report (not as a majority) but not signet (I have to assume they would report if it was there)

My onco did not raise any concerns at my review about very high risk levels (I have to assume he would be duty bound to do so)

Mucinous is now treated as per regular grading

Reports on the effectiveness of RT/HT are mixed but seem to be much worse for MC+SC/SR

Reportrs suggest that RP as an intial treatment for MC is good

All reports suggesting a poor outcome for mucinous are old(er)

Most if not all recent reports suggest mucinious is no worse than regular

Some recent reports suggest mucinous by itself may have better outcomes

Probably more....

Given that I have to asssume that my uncertainties are no better or worse than anyone else in my boat so I need to stop overthinking, shut up wittering and get on with recovery

User
Posted 19 Nov 2018 at 18:08
Having read a lot of the links I started reading about the intraductal cancer I had in my prostate in addition to the adenocarcinoma (“normal” or most common PC).

It didn’t make for good reading. I’m going to stop looking and try and deal with things as they happen rather than the what ifs. Easier said than done.....

A feeling low and shaky Ido4.

Ido4

User
Posted 19 Nov 2018 at 20:41

Damn

Sorry Ian - I didn't mean to set you off worrying. I'm just trying to get my head around my own situation not make anyone else worse.

Really sorry about that.

P

User
Posted 19 Nov 2018 at 22:00
Please don’t apologise. You didn’t set me off, I did it all by myself. It’s really difficult to get your head around this shjjty disease.

We’re all in the same boat. I’ve been out at community choir, that took my mind of things.

If we can’t vent here or try to articulate how we are feeling on this forum then that’s a sad day.

Carpe diem,

Ian

Ido4

User
Posted 19 Nov 2018 at 22:14

Ian

I appreciate that - I felt really guilty (still do a bit but that is my problem not yours ). Glad you enjoyed your choir. So do the three tenors have competition from you?

What I realised is that I have been circling the drain on this issue so earlier tonight I broached it with the radiotherapy nurse specialist hosting the cancer survivors course I am on (HOPE course is a great course by the way) and she said they would not hold things back unless they thought I would top myself and might not mention things if they thought them not important. She said she would get my onco nurse specialists to ring me tomorrow.

It made me realise I have been nervous about contacting them as I felt I was wasting their time / felt intimidated. I now know it was better all round to bite the bullet.

Anyway, feel free to vent or PM me if you need to let off steam.

Positive vibes sent your way.

PP

User
Posted 20 Nov 2018 at 08:37
The last few days have made me realise that over-digging into the science actually causes more harm than good. Getting so much information from so many sources is overwhelming and stressful. I think it is also a form of avoidance behavoir in my case (avoiding contacting the hospital).

I have addressed that by requesting a chat with my uro onco nurse to hash it all out and draw a line under it. After that I'll try and focus solely on wellness.

I'm not comfortable with this approach but that probably means it is the right one. I'll try and keep my posts on wellness and general questions and sending good vibes other people's way from now on.

Wish me luck.

P

User
Posted 20 Nov 2018 at 15:33
It does get easier eventually. At the beginning of my journey my wife and I explored the death out of the disease and treatments. The PCUK leaflets were a life saver. But yes whilst we got very wise we also got very scared , to the extent I delayed a decision a good while which may have led me to being in the situation I’m in now. I had a full breakdown in hospital and ended up 14 nights in , instead of the one or two as expected. They know I’m bipolar and very on the edge in general and I think whilst they despair me not even trying SRT , they totally get that it’s MY cancer and my decision and they know QOL was ultimate to me. I’m very much thinking they may hold some things from me that aren’t relevant , for instance I can’t believe my liver tests are fine all the time as I’m consuming well over the weekly allowance these days with the stress of it all. My rock has been Southampton hospitals PCa specialist nurses. They are worked off their feet but are always there to chat and discuss and even hold your hand and listen to how you actually feel. Despite my incurable predicament and wondering where my mets are , they actually left me six months this time because 3 monthly was wrecking my life , my relationships , and general well being. January is going to be a big decider. I’d be a liar if I said the fear wasn’t mounting again , but generally I stow it and just want to enjoy Xmas mostly. Good luck to all

If life gives you lemons , then make lemonade

User
Posted 21 Nov 2018 at 09:38

Morning everyone,

For me personally, distraction helps, but not always. I had one of my grandchildren stay overnight on Monday and right in the middle of fun and laughter (I was Spiderman v his Ironman) I had a strong feeling of melancholy sweep through me, you'll all understand it, will I see him become a teenager ? an adult ? Anyway...I let Ironman win ! Another kind of reaction happened a week or so ago whist watching a Man City game. I always look for Brian Kidd, one of the team coaches who was treated for PCa back in 2004, and when I see him I'm always boosted somewhat..but, he wasn't there and I even had a pang of low level panic !! Just look what this disease does to us. As I write, I'm looking out at very miserable, bleak day, the type that can bring people down a good few notches, but I know that I'll feel different when I've been to the gym, have my lunch out, then have a pint with a few of the lads in the pub. None of these fellow pub goers know about my cancer nor would they ever be able to tell with my happy demeanour in the boozer. I prefer it that way as I need certain areas of life to be a PCa free zone. I'm seriously considering driving for a local charity transport service that takes people for treatment to Sheffield, one that I used for SRT and was absolutely invaluable. Now, I know this sounds contradictory after writing the above except that I believe helping others and being proactive helps a lot, something you as contributors on this site will understand. Take care all and lets keep trying to ride that wave.

Paul

 

 

User
Posted 21 Nov 2018 at 11:45

Hi all

Thanks for the kind words. I appreciate them. I do need to get that separation of time away from the disease I think.

One last update on the main issue before I close down this topic.

I had a chat with the very kind and helpful rad onco specialist nurse just now and she was very good at helping me ease my worries.

She said that the pathologist who did my prostate is know for getting interested and working late over anything out of the ordinary and flagging it up. That did not happen which is good.

She also said that anything small cell or signet ring related would have been called out.

I had one larger 4+3 and one smaller 3+3 tumour.

She said she would email me the path report. The fact that she is doing this when she knows I am a worrier is probably also a good sign :)

There was some confusion over the relative volume - the GP letter said 3% and the path report said (I think nearer 10%).

She did admit that she had never come across mucinius but had looked up the same research as me and could see where I was coming from with the more recent better news. She had come across signet ring patients and they had all had their risk factors made clear to them up front. I did not have that.

She said basically I have to see what happens. I think from this I can assume that I am in the same boat as everyone else in terms of my diagnosis.

What this means is that I am going to try put this aside and take the advice of the kind peeps who just posted and start looking at the positive things in life.

Thanks all for your patience with my wobbles.

PP

Edited by member 21 Nov 2018 at 11:47  | Reason: Not specified

User
Posted 30 Nov 2018 at 12:38

Hi all

I got my path report today with the prescription form.

Interesting reading.

Prostate 34g
Tumour type microacinar adenocarcinoma with 50% mucinous
Largest tumour 1.13 cc 4 + 3 grade group 3
Secondary tumour 0.14 cc 3 + 3 grade group 1
PNI yes
Extraprostatic PNI no
Vascular invasion no
Extraprostatic invasion no
Seminal invasion no
All margins clear
High grade PIN
Other comments large focus of cribiform (edit - some sites mention invasive cribriform but my report just said cribriform)
Conclusion - RP
Final rating 4 + 3 grade group 3 pT2 pN0 Margin negative

Only thing of note is the cribiform which was made as a passing note.

I've only seen one reference in the forum which confirms my quick check that it is defaults to G4, is aggressive and can spread so fast action is needed. Some reports suggest it is an indication of existing mets.

I talked to the nurse specialist just now and we both agree that all possible action has been done.

I guess I just wanted to add this information to see if anyone else can comment on whether the cribrform is something to keep an eye pn.

Edited by member 30 Nov 2018 at 12:42  | Reason: Not specified

 
Forum Jump  
©2019 Prostate Cancer UK