Which Treatment suits me

User

Posted 22 Oct 2022 at 11:33

Just have had meeting with Urology senior nurse and basically options given to me are Surgery or Hormone with Radiotherapy.

While not crazy about surgery I am very concerned about the Hormone side effects and looking for some personal feedback from anyone who has had either treatment before I take a decision.

Am Gleeson 6 but am told the results of some other of the tests are at odds with the biopsy so preference is that i start treatment asap.

My concerns around the hormone treatment are around potential side effects, in particular, fatigue, memory/concentration loss and mood swings, particularly as I know that with me, the first two would exacerbate the last one. While my wife and daughter would I am sure be willing to support in the knowledge that it is the treatment that is the cause of my behaviour I'm not sure I would be comfortable putting them through that for an extended period of time. Additionally, I spend a lot of time with three grandchildren aged 5, 4 and 2 and obviously at those ages they will experience nothing but confusion at any behavioural changes.

User

Posted 22 Oct 2022 at 14:20

Most people find HT quite bearable with few side effects (I was on it for two years). I can think of a few posters on this forum who found it very unpleasant. I have just replied to someone on another thread who is stopping HT after nine months rather than two years, it will make little change to his outcome. So if I were you I would accept the HT; if it is a problem stop it early. RT without HT is possible but having it a few months before and after RT adds lots of benefit, having it more than a year after RT adds very little extra benefit.

Dave

User

Posted 22 Oct 2022 at 14:32

Thanks for input...would you be able to refer me to that thread as I'd like to review that person's comments

User

Posted 22 Oct 2022 at 15:29

Just about to finish 2years on decapeptyl a few hot flushes but found it tolerable psa now 0.01 from 24.9 👍

User

Posted 22 Oct 2022 at 15:52

I was on HT for 18 months. For the first few weeks I felt "fuzzy-headed" and had difficulty in concentrating on anything, but that wore off after a couple of months. Fatigue, yes, but not devastatingly so. The main side-effect of that was that I've never slept more soundly in my life. All in all it was a mildly unpleasant but entirely tolerable experience.

Best wishes,

Chris

User

Posted 22 Oct 2022 at 16:45

Hi Alex, How long did they say you'd be on hormones. If it was say 9 months total that maybe doesn't seem too long. RT itself can be difficult if you read the worst side effects. I haven't read anyone who did, but perhaps you could change to surgery if it was too much, before the RT. There are a lot of 'ifs' with all treatments.

Also there are other treatments such as Brachytherapy but not all hospitals offer it. I went for surgery as I had the common human instinct of getting rid of it and it was said to be near the edge. With a Gleason 6 they often say it's not urgent, although you did say there are doubts about the Gleason.

All the best, Peter

User

Posted 22 Oct 2022 at 20:36

Hi Alex,

Unless you are going to be on HT for life (not likely given your current diagnosis), I'd suggest that worrying about the side effects of HT is not quite the right focus for you at this stage. What you need to be trading off, in considering your treatment options, are the potential consequences of RP versus RT. In the medium to long term, these are the things that matter most. HT is a short term and transient proposition - not least because its effects will decline once you stop the treatment. As others have said, both here and in other threads, most people get through HT with side effects which are inconvenient rather than life changing.

It has no statistical value to you but I am pretty much your age, and my own experience of being on Prostap/ Zolodex for 30 months, including 9 months double banking with Bicalutimide, has been that while I notice hot flushes, bits of tiredness, about 10% off my running times etc, no one else, including my 5-year old grandkids, sees any material difference. Loss of libido is an issue, of course, while testosterone production/take up is inhibited.

Navigating the treatment options facing you is hard going. We have all been there. But the critical thing in making any decision you can live with is to stand back a bit from all the emotional stuff and the noise, and try to get a sense of perspective. I would sort out the big choices first, and only if it's a close tie would I think about adding the shorter-term variables to the calculation....

Best of luck

User

Posted 23 Oct 2022 at 00:20

Recent thread on HT.

https://community.prostatecanceruk.org/posts/t28169-Hormone-therapy-duration

If you want to read about bad experience on HT read posts from this member. I wouldn't say these were representative of most people's experience, but you should have all views. Though I doubt if even 1% were this badly effected.

https://community.prostatecanceruk.org/default.aspx?g=profile&u=49973

I could also find links with horror stories about surgery, though again they would not reflect the reality for 90% of people.

Dave

User

Posted 24 Oct 2022 at 01:19

Suggest you get impartial information from the 'Tool Kit'. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

If side effects are your biggest concern, suggest you obtain appointment with Focal Treatment Specialist to check whether you would be suitable for one of the forms of Focal Therapy. The side effects are much milder than with surgery or RT but the procedure may need to be repeated. It can be followed by Surgery or RT in need. It can be done as a primary treatment or salvage procedure for failed RT and although now available on the NHS, there are few places where it is available presently.

Edited by member 24 Oct 2022 at 01:22 | Reason: to highlight link

Barry

User

Posted 24 Oct 2022 at 08:56

Thanks

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