FWIW my story

User

Posted 22 Jul 2017 at 20:24

I am now 66 years old but in 2016 when I was 65, my wife suggested I was peeing rather often. After a PSA test - 9.35 - MRI and biopsy I was diagnosed with prostate cancer in August 2016. I was not altogether surprised but from what I was told by the excellent hospital in Derby I thought it was caught early. Bone scan was clear and I was offered RP with DaVinci surgery or HT + EBRT.

Some weeks went by trying to make the decision with info from the PCUK website, the urology specialist nurses and friends who'd been though it. It was a 50:50 choice but in the end I went for HT + EBRT for no better reason than I didn't fancy surgery. I was told both were "gold standard" treatment.

I was advised it would be either 37 or 20 sessions of RT but after the planning session I was glad that it was 20. So for 4 weeks I took two busses to the hospital on my bus pass each morning. I had to do the micro-enema thing and then 3 cups of water 30 mins before being zapped. I did suggest wine went through quicker to my bladder but told not to be silly!

I was fortunate that the hospital had new Trubeam machines. About 2 weeks in to the treatment I was suffering from pain in my rectum and frequent peeing but about 2 weeks after the treatment had finished these symptoms faded. At halfway the PSA was 1.07.

Last week I had my 4 month review after blood tests and PSA was 0.07! I was feeling great, full of life and looking forward to another 20 years of life.

My paternal heritage is not great with heart attacks and Leukaemia but the maternal side is strong, dying at 90 and 95 years old so I hope I have inherited the female line!!

My HT continues for another 18 months with the downside of the sweats but on the plus side I only shave every other day! The lack of libido and ED are not an issue as our relationship has not been based on that sort of thing. After 44 years of marriage hugs and kisses are just fine.

So, I believe I have beaten the evil disease - hope this helps someone. It seems many men have such different symptoms and treatments that my story is as unique as anyone else. Via a Facebook friend in Ecuador I was put in touch with a friend of a friend in Scotland who was suffering from lack of info from his hospital and I think I helped him.

User

Posted 23 Jul 2017 at 06:17

Good for you Westyman and thanks for the update. It's always interesting to get another's perspective on their treatment. Had you added that the friend in Ecuador was the one suffering from lack of information I wouldn't have been surprised but isn't it odd, annoying and really unacceptable that somebody in our own country, with all the resources available, cannot get the necessary info to deal properly with their condition. Carry on the good work and I'm really glad for you that the treatment hasn't spoiled what you share with your other half

We can't control the winds - but we can adjust our sails

User

Posted 23 Jul 2017 at 13:08

I was recently offered a similar choice to you, but I plumped for surgery instead. I guess that's partly because I didn't fancy years of hormone therapy, but also because I bought the argument that examining my prostate and lymph nodes under a microscope would provide better evidence for what's actually going on in my case than all the less invasive tests I've undergone so far.

I still haven't discovered what the microscope has revealed, so for all I know I might be in for a dose of hormone therapy in the near future anyway. However it does seem strange that the experts can't agree on a recommended course of treatment, and that at the end of the day things come down to tossing a metaphorical coin.

Reality is merely an illusion, albeit a very persistent one - Albert Einstein

User

Posted 23 Jul 2017 at 16:44

There are situations where the 'experts' advise a particular treatment be adopted or that a certain treatment is best avoided or is not recommended. In many other cases urologists are happy to recommend surgery with oncologists suggesting RT, as a case can be made for either treatment. It is then left to the individual to decide having considered all the pros and cons of treatments and potential side effects of those treatments in relation to himself. The priority of some men is cure for example, whilst others put greater store on mitigating side effects. There are many reasons and complexities why men make a treatment choice which may indeed not include surgery or RT and it is right that they choose one of the options open to them, so not so strange when you consider possible repercussions that 'experts' may leave the decision to the individual.

Barry

User

Posted 24 Jul 2017 at 20:16

Thanks for the comments. I meant to include that I was T3a and Gleason 7 (3+4). Nerve sparing from DaVinci surgery was not possible owing to the cancer cells being on the capsule wall.

User

Posted 26 Jul 2017 at 20:06

Sorry Westyman - I didn't mean to hijack your story with my "metaphorical" remark.

Barry/Andrew - If you'd care to continue that conversation then perhaps we might adjourn here?

http://community.prostatecanceruk.org/posts/t13034-Leo-Robot-spares-some-nerves#post161238

Reality is merely an illusion, albeit a very persistent one - Albert Einstein

User

Posted 29 Jul 2017 at 15:44

Originally Posted by: Online Community Member

No problem!! :)

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