HI all.

Hi Stuart,

Thanks for that, interesting (and encouraging).

It's one of those things ... My MIL was as heavy smoker and then got COPD. She was told that if she gave up smoking she might live a couple of years longer but she chose to carry on. She would rather die 'early' happy than live longer unhappy.

I'm not suggesting I'll not do something here, just that I may not think to consider the importance of things here and now (when the focus is life or death) and then regret / suffer from making the wrong choice (for ever).

Knowing what's practically possible, even when things change, all help me see the future a bit more clearly (thanks).

Hello again Able

all men are different and all differ in their response to the treatment pathways. 

my husband actively chose the HT and RT route with ‘the intention to cure’ . For me, the side effects of the HT are profound. My fit, active,alert ‘young’ 75 year old husband has now become a 10 year older 76 year old living in a permanent state of jet lag.   It breaks my heart! He might not agree with what I’m saying, of course! It’s all subjective!

the weeks leading up to the RT were, for me, very scary. I was terrified of the side effects we had been warned about! Actually we both got tired because of the travelling ( I was chauffeur) . He had a bit of stomach bloating and a bit of urgency in passing urine. All very minor and resolved within a couple of weeks or so.

The concern now ( just as for those who have chosen the surgical route) is whether the treatment has worked or whether there will be a resurgence of the cancer once the ht is discontinued.

There is never complete certainty over any cancer treatment other than there remains uncertainty!

I think the decision you ultimately make should be based on what feels the best option for yourself, what  outcomes and side effects are possible and how you think you could or could not cope with them. 

you don’t mention a wife or partner? As I have said many times, prostate cancer is a couples illness. Your partner will be your sounding board, your support and have their own thoughts and opinions?

Finally, you are still in the first stages of the shock of the diagnosis. It takes time for things to settle in our minds as we are brought face to face with our own human physical frailties. You don’t have to make the decision now, this minute. Take the time you need to do the research, ask the questions and weigh it all up. Don’t feel pressured to jump today or even tomorrow:)

I think our age group still think of a cancer diagnosis as a death sentence. I look at my husbands family history. His grandfather died in the 1960s of prostate problems - the word ‘cancer’ was never spoken of then as cancer carried a big stigma in those days. My husband’s father was diagnosed with stage 4 prostate cancer in the 1990s. The only treatment offered was hormone therapy to extend his life for a couple of years or so - no newer drugs such as enzalutamide etc then! My husbands cancer was caught earlier thanks to regular PSA testing. He has had genetic testing. Our 4 children are to be monitored annually ( mammograms for girls, PSA annually for boys). pC is now discussed openly i public and private ( think Stephen Fry, Bill Turnbull etc). Yes, prostate cancer can and does kill but it also can be cured or controlled.

Im in too much of a reflective mood this morning so many apologies if this does not help!

Prostate surgery doesn't make orgasm impossible, it is just different. It is erectile disfunction and the ability for penetrative intercourse that is affected.  Because the seminal tubes are removed during surgery the ability to ejaculate and father a child goes.

As others will confirm there are ways of having a mutually satisfactory sex life, without penetration.

Those taking the HT route not only lose the ability to get an erection, but also the urge for several years or in some cases permanently due to the testosterone suppression.

It's not a walk in the park whichever route is taken.

We also spoke to others who'd been down the surgery route and we have no regrets.

Hi WW

Good advice to take time making the decision and not being pressurised into anything.

Regards

Stuart

My understanding is that if you have surgery, you can have HT/RT later, but not the other way around. That was one of the drivers for my choice. Also, like you, I'm pretty fit and active and surgery seemed like the 'quick' solution. One night in hospital, then a catheter for 7 -14 days, then back to normal(ish) life. Can't say whether this will be true yet as only on day 4 after surgery, but feeling good.

There are other types of RT available that you may be eligible for (e.g. Brachytherapy??). I don't have any knowledge of these but others may be able to advise.

Ditto our reason for surgery. Hubby now has the option of RT  if his PSA rises over 0.2 in future and apart from the tadalafil for penile rehabilitation, no other drugs with the side effects.

Last week we went to a wellbeing session at the hospital where my husband had surgery. This was for all types of cancers and it covered exercise, diet and many other things.

At these sessions they have volunteers to talk about their cancer experience and it just happened that at this one it was PC survivor. He told us that his PC  was discovered by accident after he'd gone to the dr about his arthritic knee. He had a scan of the lower half if his body and it was picked up then, without a PSA test.

He didn't go down any if the treatment routes that I've read about on this forum. He said he'd done his own research and discovered a treatment call Focal Therapy. He asked if he could have this, but it's not availability in our hospital. It was however available at one of the London Hospitals and they agreed to refer him. I don't know much about the treatment other than it being used to target the cancer cells and freeze them  killing them but not damaging the healthy cells. He's still got his prostate and not taking HT.

Hi Ww,

Yes, I do have my wife of 33+ years, well, sort of, as she was diagnosed with dementia at the beginning of the year but I had been noticing her 'changing' for a couple of years before that. So like you, I have observed my mate, my partner getting older very quickly. This is the person  who helped me build a kit car, rode a 750cc motorbike, got her Radio Amateur licence alongside me whilst she was very pregnant and who now can hardly lift a kettle, can only walk with any level of confidence when pushing her wheelchair and hardly remembers anything new. They say you lose them twice with this disease and I've already lost her the first time (and I miss her very much).

So no, in this case she now can't be my sounding board, my logical / rational advisor and mad scam limiter. I'm not even sure she understands I have cancer and where or how 'a scan' isn't going to fix anything. Luckily, our daughter is very much around and makes herself available to chaperone me when and wherever she can and her partner is very willing (and good) being my child minder re the Mrs.

Re doing my research ... I've never been one who learns well that way. I come from the 'mentoring' camp, 'what you hear you forget, what to see you remember and what you do you understand' sort of thing. There are also some things I simply cannot do, even whilst trying over many years, like software programming.

When I try or try to do research (on some things)  it's as if it's in another language (excuse  the pun), like an alien one and I can feel my tension levels rising fast when I try. I think part of that is unlike most other things I can do, where they build on other things I do know, with PC every step seems to open more questions than it gives answers. Daughter thinks I might have ADHD and / or possibly be on the Asperger's spectrum and I think she's probably right.

So I can listen to a consultant give me an overview of the story (where they apologise it will be 'a lot to take in') and nearly quote it verbatim after we leave, because I can focus for that short time and can absorb data better when it's presented that way. I was given a load of PC booklets after I had the MRI scan and have done a deal with our daughter, she reads the booklets and presents the information to me in a condensed form and I research and help her buy a replacement car (now done). ;-)

Thanks again for the information,. It's all helping to paint the 'Bigger picture' I need (I think). ;-)

This is the thing with sex and having a 'sex drive' (damn you testosterone for male pattern baldness AND PC) and that's if you don't have the latter you (personally) don't 'miss' the former?

Since the Mrs was diagnosed with her dementia that made us being us more difficult, not only because she doesn't instigate it like she often did, I don't feel the same desires because of that (inc being her 'carer') and her arthritis and general fragility. When we do get some 'us time' we both generally enjoy it (her more times than me <blush>) but I can sense those times are already becoming fewer and further between.

So I think I might be putting the 'rating' of that particular aspect down to maybe 6/10 and probably under 'complete continence' and no other restrictions to a reasonable/ functional daily life.

One of the recommendations for penile rehabilitation is to take matters into your own hands wink wink. I don't know if my husband has taken this on board yet as for not he's concentrating on his continence and won't let me anywhere near for fear of an embarrassing leak. I've given him my personal to do it in the shower so only he knows  but he's still quite shy about such things after only being together for 53 years.