RT?

I think you need to clearly ask whether the RT is a potential curative pathway or not. The hormone therapy is systemic only and will fail over time. That time can alter from man to man. If the RT is meant as curative then you seriously need to think about giving it a go. I believe the RT machines are not claustrophobic at all. It moves around you quietly and is not like a tunnel. The side effects are always a massive worry , but many can be tolerated or handled with the right advice. Best of luck whatever you choose

Thanks Chris J and franclj4

The RT is intended to be curative - the cancer's localised with completely clear CT and bone scans.

It's very difficult to find straightforward information about the risk of side-effects (% of people getting them, % who continue to have long-term effects etc etc) and thus tricky to make an informed decision. Understandably, the medics have to tell people about every possible side-effect, but that isn't at all helpful in deciding what's best for an individual. I've got a month or so to make up my mind.

Edited by member 29 Mar 2018 at 16:47  | Reason: Not specified

Thanks AC - most helpful.

The oncologist - who comes across as really expert and is very open to discussion - appeared very certain that there'd be unpleasant side-effects (especially incontinence) to the RT. I'll certainly talk more to the radiology team about what they could do to lessen this when i go and see them.

But if a high % of people have extreme tiredness and/or incontinence as a long-term effect of the RT, it'll me make much less keen to go down that route. I'd be interested to know if there's any published research on this.

Thanks LynEyre - very interesting.

Learning lots here: will ask about the SpaceOar gel. Don't think the oncologist thought I'd be especially prone to incontinence - it just seemed that her view was that everyone would get it. I'd be very happy to prove her wrong.
Doing fine with the hormones - a bit of tiredness, but able to have an hour out on the bike most days. I'm reckoning that - if I do go for the RT - I want to be as physically fit as possible before it starts.

Thanks Rich12 and graham61

I can't do an MRI - tried it years ago when had back problems and had to be hauled out after 30 seconds.... CT scan is OK (as long as it's feet first). Bone scan was very unpleasant - had to keep my eyes shut the whole time. But good if the RT is very different - the blurb from the hospital mentioned claustrophobia and that spooked me. The hospital radiology dept does open evenings - I was wondering about going and having a look at the machines, but thought it might just get me on edge...

Very helpful to know the side effects can be quite mild - the blurb the radiologists dish out lists them all exhaustively, and in graphic detail, but without any indication of the probability of an individual getting each of them.

I was quite prepared for the HT to be difficult, but a bit of tiredness and not quite the same (ahem) 'quality' of erection as before. Otherwise fine.

Lots of men can still get erections on HT - it is the libido that is usually killed, not the ability to get hard

Edited by member 29 Mar 2018 at 21:14  | Reason: Not specified

Possible similar analogy - Car steering wheels have what you cal a spiral cable. It is the same. As you rotate a steering wheel with an electrical connection it cannot rotate continuously in one direction. Does that explain it?

Haven't heard/noticed of that with RT/HT, any one ?

When I was put on Tamsulosin I did notice better blood flow, 'at rest' down below, and better resistance to the effects of cold weather.

Edited by member 30 Mar 2018 at 13:34  | Reason: Not specified

Thanks guys for all your helpful advice and information. It's obviously important to go ahead with the RT - a lot of my fears have been calmed by getting things into proportion. Also talked to a mate who's a GP and has seen plenty of people with prostate cancer over 25 years or so. He was upbeat about the outlook - men where it's localised have a very good prospect indeed of doing well, and he was reassuring about the side-effects too. He reckoned that there have been big improvements in avoiding bowel-related side-effects and that the tiredness can be dealt with.
So 37 sessions of RT starting on May Day. Deep breath time...

Check-up this week, 8 weeks after the end of the RT. PSA now 0.2. Consultant very pleased with that and told me to go away and forget about it all for the next few years. 2.5 more years of HT, so things could change 12-18 months after that but for the moment everything looks fine.

Next PSA check in 4 months then, assuming that's OK, every 6 months - and results by phone so no need to see the hospital again for a long time, I hope. Seems like the RT has done its job - much relief.

Excellent news.

Ian

Update: 6 months post-RT check-up showed PSA to be ＜0.1 (hospital lab says it can't measure reliably below 0.1). Next check-up in 7 months, so looking good. 

Started to get some breast soreness as a result of Zoladex (another 2 years of that to go). GP fairly useless in giving advice on that, but looks as if Tamoxifen might help? Any views most welcome.

GP seemed to think that Tamoxifen was an option, so looks as if it can be prescribed. But he didn't want to do anything without the oncologist's OK, so now pursuing her for a discussion.

Incidentally, the oncologist was very annoyed that the urologists didn't re-check the PSA before starting HT. Nobody had told me that I shouldn't ride a bike or have sex for 48 hours before the PSA test so, shall we say, the initial PSA level was not necessarily accurate. Clearly it was elevated, but the actual level will have to remain a mystery....  Definitely worth making sure that the PSA is tested just before starting HT (and minus bike-riding and sex...)

37 fractions of 2Gy has been standard for many years. Recent research found that healthy men could take a higher dose than previously thought (up to 3.2Gy) without causing additional side effects.

RT is cumulative so 19 or 20 fractions at 3 or 3.2Gy (around 60Gy total) is as powerful as 37f x 2Gy (74Gy).

Okay Lyn and Ian that's really helpful thanks.

Edited by member 07 Jan 2019 at 08:29  | Reason: Not specified

Just to update: a year after RT and PSA is 0.1. Still 18 more months of Zoladex to go, but the consultant told me to go away and enjoy myself - keep doing plenty of exercise and ignore assorted muscle aches and pains. Six months till the next check-up.