Originally Posted by: Online Community MemberHi Frank
I had margins left on my bladder neck and 5 cancerous lymph nodes during surgery. He feels tiny margins can't be giving this psa and doubling rate , but has no other option to offer RT as a last ditch.
In all honesty I think if they get these scans right then they are amazing. But I think they don't often get them right. The tracing dye is immensely difficult to produce and time correctly. Two cancelled scans at Oxford last minute and two cancelled scans at London last minute. I don't think they've streamlined the technique yet to be honest and am fearful I'd be undertaking the RT on false data
Good morning Chris,
I am sorry to poke my nose in on this thread, but I thought my experience may be of interest.
I have had 2no PSMA PET scans over the recent months. Mine were done at The London Clinic. Both scans were incredibly detailed and we're able to advise my Onco in miniscule detail where my secondary mets were.
Following the 1st scan the treatment followed was Chemo. The 2nd scan was to identify it's effectiveness. Again the PSMA PET scan picked this all up in minute detail.
You indicate that they might not have got the scans right in your case. I would be amazed if that were the case. These things are not cheap and I am sure BUPA would not have authorised these tests going ahead in my case on the assumption that it may or may not work. No chance.
As regards your future treatment, I am confused. Why are you looking at RT where there does not appear anything to aim at?
Should you not be considering Chemo if there is something out there?
All the very best wishes to you Chris
Regards
Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either" |
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Dave that's very kind of you to reply thank you. I guess I'm just wary that the injections are so difficult to make and all my cancellations etc could mean I got a duff one. But I see that you had superb results and wish you the best with your treatment.
I have no idea which way to turn other than HT only for the future
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Chris,
I know how important your sexual function is to you. Is Chemo without HT an option? I'm assuming chemo and the associated steroids one has to take don't affect sexual function, this assumption would need checking. I've been on Zoladex since August 2013 so I don't know the answer to this. It's been a long time since the old boy stood to attention.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif
David
Edited by member 04 May 2017 at 10:36
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I have received fabulous advice from so many of you kind people on another thread in order to help me make a decision. I left a message with my specialist nurse on Sunday night and I was in a bit of a state emotionally. He called today and said he was kind of expecting to hear from me lol !!
I fed to him that El and I had already more or less decided again that I didn't want RT based on incomplete facts , and that my mental health had just plummeted in 4 days etc.
Explained I had loads of advice from PCUK and from research and that I would like a second opinion. He was FANTASTIC and reassuring as ever and fully agreed with me and says the team at Southampton understand I may need my treatment ' tailoring ' to give the best all round results. He has insisted I will get a new appt with a different Onco without having to pay, and fully reassured me it's not a ' closed-shop' between consultants there. I can't mention names but there is an AMAZING Onco here who is running the new headlined immunology unit at Southampton , and he specializes in prostate and bladder cancers. I've asked if I can see him either NHS or privately. I've had superb service in this area so I feel more at ease. I've been told it's fine not to restart HT until some decisions have been made.
Thanks so much to all of you on this precious forum.
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Glad you're happier Chris.
Ulsterman
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Chris, that's really good news, and power to your elbow for doing it!
Flexi
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Chris
I read the other thread, felt for you both but nothing I could have added at this time.
Fingers crossed this new path leads to the success you've worked so hard for.
Ray
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So happy that you have something to work with, that your team have been so supportive and most importantly that you sound a little more upbeat.
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Top news Chris! I'm so glad you've found some light at the end of this particular tunnel
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I'm so glad to read such a good news from you, Chris.
As you know, I also sympathize with you on anxiety matters. I thing it's time you calm down and look forward other opinions and treatment}?
Best wishes
Lola
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Great stuff Chris! Well done in perservering but
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Great news Chris. Please for you
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Hi Chris,
Well done for getting the result you wanted. Really good news !
Steve
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Result, well done mate
Bri
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Well done Chris for taking control. I hope I can do the same to ensure the best possible treatment .
Paul
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I love it when a plan comes together.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hello forum friends. Awful fortnight for El and I with mountains of emotions and a river of tears :-((
We had our second opinion on Friday with a Professor of Medicinal Oncology. We instantly warmed to him and he had thoroughly gone through my medical history before the appointment even so far as my pituitary , thyroid , bipolar complications. Luckily he is taking us under his wings as my regular Onco is moving to Leicester. We feel if anyone is ever going to cure this damn disease then he will be in on it .
His feelings , given my history and stats , are that whilst technically my only last chance of cure is RT , that it is extremely unlikely to provide that cure. Given my mental health , my fear of undertaking it , and the real concerns of bladder , bowel , ED and lymphedema , whether transient or permanent , we have decided between us to not have it. Also in consideration is that no-one would have a clue anything at all was wrong with me. I am basically fully recovered from the operation physically including sexual function , and was recovered mentally mostly until this all started up again.
So I am left with what he calls a palliative path only , but I have everything in the bag including RT if I need it. More pleasing to us was that for the time being he is happy to do nothing !! He stated he wouldn't just treat a moving PSA when the best scan available in the UK , my PSMA-PET scan , showed no cancer anywhere not even the margins.
The way forward is very regular PSA tests and when he feels comfortable another full suite of scans. He anticipated I might have one to two years of freedom which we will both enjoy to the limit ( planning two holidays already ) , followed by maybe all the tools in the bag which I will just have to face when I get there.
When asked if I would see my 60th birthday it was statistically quite unlikely, which is obviously very sad for all of us , especially having a young child.
On June 7th I will be 50 years old and on June 15th I will be exactly 2 years post op and 2 1/2 years into my journey.
Its all been very unpleasant for all of us , but by god some fun ahead I hope.
Stay safe all xx
Chris J
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Hi Chris
I have been following you since my run in with PC and your strengths atacking it head on and i am sure it will continue and wish you all the best with treatment.
You are a great inspiration to every one one here, good luck mate.
John
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So sorry, Chris, about your last fortnight, but I'd rather look at the fact that the best scanner hasn't found cancer. So, may be there is another reason why your PSA is high. A strange one, who knows.
Enjoy the present time and remember science is improving on prostate matters so much.
Now some reliable doctor is caring you. Trust him and wait peaceful your PSA control.
I really wish you all the best.
Lola
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Chris
Obviously sad reading some parts of your post. On the better news you have got one of the top men on you side whom you both feel comfortable with. You're some positive fighter, no doubts helped by EI. Keep that going and I'm sure you will sqeeze all the fun out of life you can.
The very best of luck
Ray
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Well, the overall, long term news isn't good but........How fortunate that if you have to leave a consultant you are used to that you get one you can both warm to and not only that he took the trouble to read your notes BEFORE you saw him instead of leaving you fidgeting in the chair while he went through them at the appointment.
OK, so the current thinking isn't going to be celebrating 60 years young but in the estimated one or two years of freedom (which I'm bloody sure you're going to enjoy to the full!) things might change in the treatment line.
I sincerely hope so.
Best Wishes
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Chris,
Sounds sensible advice to me, to really enjoy the next couple of years and see where things go from there. Lots of fellow sufferers have proved the statistics wrong - big time.
Flexi
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Drink wine, drink love, drink life. We all have no other option.
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Hi Chris,
The first thing I want to say is Statistics let's get those chucked straight out of the window they don't mean diddly . Cmon statistically if you eat an apple a day it keeps the Dr away .
Statistics only apply to those that conform to the norm if you don't fit the box then statistics don't apply it's a known fact . Statistically Trevor should not be here ! But he is .
So start planning those holidays and add in a few Saga Cruises. Just think of the places you can visit on that bus pass 🤗
You my friend have a whole bag of tools , a giant bag of lemons and lots of life to enjoy ❤️
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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I am liking your new onco's approach very much CJ - roll with it
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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CJ
Keep fighting mate your are a inspiration to many of us on here.
Thanks Chris
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Hello everyone.
Been a while , enjoying life love and travelling. Oh and working too !
Saw new Onco today. I have been off HT for exactly one year now and chosen not to have RT.
PSA measured today was 7.6 up from 2.7 five months ago. My doubling velocity remains at approx 11 weeks. He is happy to keep me entirely off treatment and test 4 monthly. He will restart scanning if there is a velocity change and / or I experience body pains anywhere. He made it quite clear this is inevitable eventually. This plan fits with us both and my mental health issues and quality of life concerns.
Treatment plan ahead will be injectable HT , early Chemo , and Abiraterone has been offered.
The hugest battle I'm facing is mental stress and not knowing when I will deteriorate. I still want to pack my bags and run somewhere but I don't know where , and am tethered by my family life obviously.
Anyway thanks all for this site x
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Lovely to hear from you Chris with an update, albeit not a brilliant one. Still, it's probably what you expected eh and could have been a lot worse.
Yes,you have a few issues coming at you in the future but as we are always telling people on here, life with PC can change with the different treatments coming in. Hopefully, they'll be something for you then.
As usual we do our best to understand what it must be like for you with the stress and I can empathise with your desire to run away and hide, but that isn't you. You have fought it right through to this point and with your family behind you I am sure you'll give it your best shot.
Keep strong my friend. You know we are here for you
We can't control the winds - but we can adjust our sails |
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Good to hear from you. Let's hope the treatment can hold off for a while so you can continue just getting on with living.
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Good on you Chris - dealing with PCa and mental health issues is a tough call. Life, love and traveling sounds like a good antidote and great that you have a supportive onco. Keep on trucking.
Ruth
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Hi Chris
It's been a tough call you made but sounds like it's the right one for your quality of life.
I've just recently decided to keep on with the tabs instead of going down the road of IHT.
ive not reached a point yet where the control stops and decisions on next step have to be made so I'm just plodding along doing as much as possible and keeping my mind away from the inevitable.
I don't know what else one can do
You take care and do the things you've always wanted to do.
I wonder sometimes whether one needs to be a little selfish - who knows?
Paul
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Hi Chris,
Just to say thinking of you, life, love and travelling... you continue to inspire... working too... you are a superstar of a man.
Hope you've lived and loved this weekend.
Thanks for the update
Clare
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Oh Chris that wanted to pack your bags and run comment certainly struck a chord with me , in fact forget the bags I have wanted to run and run so many times . In reality I don't run anywhere but in my head I run and run everyday as far away as I can get from the reality of our situation.
All of that running and not getting anywhere is exhausting trust me I have been to John Ogroats and back 🙃
The run trigger in our heads is a primeavel trigger to get away from a scary situation that in olden times would have got us as far away from a triceratops as quickly as possible but sugar when that Triceratops is trapped in your head then running away from your self is impossible .
Not sure if this would be an apt description for you but I suspect it is and it is 100% description for me. This is all a bit deep but just wanted to give my anology on living with pca.
Hence my Never Laugh at A live Dragon that is pretty much what it means .
If only we could have the mindset of dogs because they truly live in the moment , they don't think of the past nor the future only the here and know what is happening at this moment and if this moment is good then enjoy it to go the max.
Xx
BFN
Julie Xx
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Hi everyone it's Chris's wife Elaine here. I've been re-reading a lot of the comments you have all posted over these months - I'm in the background hovering usually but wanted to come out of my shell and personally thank you all for the support you have shown and continue to give to Chris and I. I'm not really a forum-ite (for want of a better word!) but PC UK has been of huge value with information, support and friendship. Its been a difficult journey which you have all followed and I just wanted to say a big thank you for your company and your very kind and supportive posts to Chris - they do mean a lot.
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Awww, hi Ell. It isn't easy for anyone - wives and families included - and you have more to deal with than most of us. Glad to see you posting here x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thank you Lyn! Life sure has been turbulent.... but then everyone's journey is a rollercoaster - I guess it's all about holding on as tight as you can :) x
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Hello from me too Ell.
All we can offer is that listening ear and the shoulder to lean on.
Sometimes it's frustrating to read another person's posts and not to be able to physically do anything to help so it's good to know that we have been of some use. Thank you for telling us that.
Best Wishes to both of you and your family XX
Sandra
We can't control the winds - but we can adjust our sails |
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Follow your gut Chris. The gut is often right. When you run, look up, look ahead and never look back. You won’t escape the Demon but you will have a sense of control which always psychologically boosts QOL.
Good luck brother
Bazza
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Hi Ell,
Lovely to read your post. My husband isn't a poster and doesn't even read the threads but does ask me about things that are happening on here but prefers not to look himself.
I have found it really mentally helpful to have somewhere to write and ponder and have gained much 'intelligence' from Chris' very informative posts.
With best wishes to you both
Clare
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Welcome Ell lovely to connect with you.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hello from me ! Often read Chris's posts ,like claret my husband reads nothing ,I have to drip feed him information !
Best wishes
Debby
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Thanks for the welcome! It's nice to know I am not the only background hover-er :) We have talked a lot lately Chris and I, and agreed that I hijack his thread and post a quick follow-up. I hope it doesn't sound like I am telling anyone how to suck eggs as it's definitely not the intent!
I know many members have publicly and privately messaged that his story and input has been of immense help to those that find themselves in this horrible position - who knows maybe this will help too. It's a perspective anyway. It has to be said we are a complex picture and the cancer diagnosis unhappily came in a very settled time. So now all these months down the road we find ourselves still here taking in seemingly forever new ground. One of the great strengths we have is our ability to talk and be honest - well these conversation just keep getting down to the bare knuckle and we are both a bit wrung out.... but what I would say to anyone struggling is keep on talking no matter how awful it may feel because it's the only way forward. Stating the obvious? Probably! But sometimes REALLY straight talking about hopes and needs and wants and desires and fears makes you learn bits about yourself and each other that you maybe never realised were there. And this very cruel cancer affects pretty much everything possible.
So at the moment on this journey we are playing the waiting game and still talking, figuring out and still trying to forge a way through all the crap that the cancer throws up. And thinking outside the box too to help Chris find his path and a bit of peace. Yep we all get mad, angry, frustrated, hurt but once you get through those moments there are key words - kindness, compassion, love, goodwill, generosity. Altruism. That's a hard one! (Isn't Piglet supposed to be the only true altruist?!) Communication can be hard (hands up!) but it's just so so vital xx
Edited by member 04 Oct 2017 at 16:18
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Lovely to finally be able to chat with you El and yes I totally agree with everything you said this piggin disease is a clucker and that’s putting it mildly .
Chris has been so open and honest with his journey i take my hat of to Him .
BFN
Julie x
NEVER LAUGH AT A LIVE DRAGON |
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Thanks everyone and Elaine. Yes this last six months or more has been traumatic in every sense of the word. I may be off treatment and physically outwardly looking fine at the moment. But the monster is growing within. I wake up and it’s sat on my shoulder , I wrestle with it all day , and then I take it to bed with me at night. Just biding our time because it’s doubling so fast yet even the Hubbell Telescope can’t find it , even though it can see a clanger fart two trillion light years away. Yes I’m gonna get poorly again and have whatever they throw at me , but when. My problem has been awful , especially being bipolar on top. I want to run away , live my time , get drunk , sit up all night watching films — other stuff I can’t talk about on here. Yet my ties to home and correctness and fatherhood and work and being a husband seem relentless. I can’t escape , I don’t know if I want to , I need to , I can’t find a way.
Yes poor Elaine has had to deal with all this. It’s virtually broken us at points. I think it has actually. But we are soldiering on and talking and taking breaks and coping through a terrible strain. My plight is not yet as bad as many others on this site , yet knowing it’s there ticking and will come back and is incurable is a tough burden to bear.
Next PSA December and full bloods also. When to scan again they not sure but my psa will be over 10.
Thanks , everyone, as ever x
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Hugs Chris, big hugs.
I'm facebooking with my nephew and godson who is also going through a bad patch through depression and he doesn't have the cancer to contend with either.
It's a bugger innit !!
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Hi Chris and Elaine
The thing for me is that I always try to say it as it is but not to be too miserable about it. We have been so incredibly lucky, despite spread to bones and lymph and Gleason 10, nearly seven long years ago. I remember praying to a God I don’t believe in and asking for four years and, well we have had seven so far. Life is up and down but I still have my lovely man with me, I cannot complain.
But I want to!
It’s lovely that you can talk to each other.
Lots of love
Devonmaid