Ignoring it all..........QOL

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Posted 17 May 2017 at 18:45

So after being seen at UCLH and having a transperineal biopsy they tell me I have a tumor Gleeson score 7, at the base of my prostrate near the sphincter,ruling out surgery otherwise I'll be permentantly "wet" says the surgeon. Put on 150 Mg Bicalutamide, and referred back to my GP.

Here's the thing, I'm 71 years old, in reasonable health, and having read so much about treatment I'm becoming more and more inclined to just think to hell with it, quality of life ( ignoring the urination problems although helped with Tamsulosin) is far more important than an endless succession of doctor and hospital visits, I'm therefor curious to what others think that may be in a similar situation, go with the experts, or trust your own gut instinct and hope for the best

Edited by member 17 May 2017 at 20:20 | Reason: Not specified

User

Posted 17 May 2017 at 20:27

The difficulty is that you are tempted to assume that the situation will stay the same as it is now, which it would for a while but not forever. If your cancer is left untreated and unchecked there will come a time when it blocks your bladder completely requiring you to self-catheterise or wear a permanent catheter (possibly inserted through the lower belly), or it will spread to organs or bones leading to extreme pain, kidney failure, fractures, etc or other horrible side effects. However that does not mean that you have to have treatment now or in the future, just that you would need very careful monitoring and to be open minded about changing your mind if the disease progresses.

Two examples: my father in law was diagnosed at 79 and refused all treatment because he didn't want his sex life affected (a much younger wife!). He went on active surveillance and lived 4 years - the monitoring was not very thorough so no one noticed that it had spread to his liver, kidneys and spleen. He died very suddenly 24 hours after a scan to find out why he was so poorly.

My dad had the surgery 15 years ago and thought he was in remission but it came back 3 years ago. He has decided not to have any treatment unless it starts to affect his quality of life. I have had to accept that he will die sooner than necessary and that it is his right to make that choice but I am also conscious that he is basing his decision on how well he feels now because he cannot know how badly he might be affected as it spreads and progresses.

Edited by member 17 May 2017 at 20:29 | Reason: Not specified

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

User

Posted 17 May 2017 at 20:35

PS opting for treatment or proper active surveillance would not automatically be a constant stream of doctor appointments. You would need a PSA test every 3 months, usually done by the GP or the nurse at your local GP practice and - assuming your PSA stays fairly stable - an annual review with a urologist, oncologist or urology nurse with DRE (finger up bum) and possibly an annual scan. If you stick with the hormones you probably wouldn't need the annual DRE and scan.

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

User

Posted 17 May 2017 at 20:37

PPS did they say anything about maybe having radiotherapy or brachytherapy after you have been on the hormones for a few months?

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

User

Posted 17 May 2017 at 20:50

Hello, and thank you for your input, at ACLH the first consultant I saw said radiotherapy was a very blunt instrument, and advised against it, 10 days later his colleague ruled out surgery, so I was completely bewildered, he was the one who put me on 150 Mg Bicalutamide just 6 days ago, although didn't really explain why, my fault for not asking I guess

User

Posted 23 May 2017 at 22:37

Hello Ekka. I’ve just joined and this is my first post too. My recent diagnosis is similar to yours, Gleason 7 and had a transperineal biopsy, at Charing X, also helped with Tamsulosin

I was sent the Toolkit of useful booklets. Just been reading about Bicalutamide. It stops the testosterone attaching to and going into the prostate cancer cells so holds them in abeyance.

71 is no age these days. My brother-in-law, 72, has to work 4 days a week to keep his wife in clover.

Different specialists sometimes promote their own speciality as the best option.

The Urologist advised me to go for Radiotherapy, not surgery, (which he would have carried out) as best option. He was going to put me on Bicaltumide too, until he learnt I had a minor liver problem.

I understand the Radiotherapy is very precise these days, computer guided like everything else.

My neighbour had PC 17 years ago now, and it had escaped outside his prostate. He had radiotherapy and hormones, refused chemo, said apart from a bit of sore skin, the worst bit was the travelling. These days he just has a hormone injection every 3 months and has never had any problems.

I shouldn’t be put off by consultants not explaining themselves.

Edited by member 23 May 2017 at 22:38 | Reason: Not specified

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