44 and a decision to make in 3 months

Hi Carl,

I am in no way qualified to tell you what route to choose, but if I was your age and had the choice it would definitely be RP. My reasons would be

1. Your young age and family history.
2. If something is left behind you’ve got a fallback
3.  ED and incontinence may be a problem side effect for you with RP, but on HT/RT route you’ve got lots of side effects to deal with…Hot flushes, fatigue, brain fog, muscle loss and joint ache, Peyronie’s disease(might also happen on RP), emotional issues, total lack of libido and ED during and after treatment(which might last 3 years). I’m not saying you’ll get all or any of these, just speaking from personal experience.

My advice is go along to a support group if you have one, and speak to others who have had these treatments. I know in my Maggies Group all those who have had RP say they made the right decision even though they still have issues, whilst those going down the HT/RT route wish they had been given the choice of RP. Very few if any make the choice of HT/RT.

All the best with your decision.

Derek

Edited by member 01 Jul 2023 at 22:01  | Reason: Not specified

Hi Carl, I'm really sorry that you find yourself in this situation. I'm also sorry to hear about your dad's passing. I was 47 when I was diagnosed last year — a bit older than you but still relatively young in prostate cancer terms. My dad also died from prostate cancer, but he was 88, which was around the same age his own father died, so probably about his natural lifespan. 

Of course, I can't advise you about what you should do, only tell you what I did and how it turned out, and what I might do in your situation. My cancer was graded Gleason 7 (3+4) with 20% pattern 4. There was also peri-neural invasion, meaning it had got into the nerve capsules (the internal nerves inside the prostate, not the external ones that control erectile function). The cancer was stage T2 and confined within the prostate. I spoke to specialists about surgery (RP), focal therapy (HIFU), and hormone + radiotherapy. One urologist also recommended active surveillance. So basically, everything was on the table. In the end I chose surgery. I had initially hoped that I could have HIFU but the specialist I spoke to at UCLH was quite negative about it and said that he thought that if I had it the cancer would return. He also said that HIFU, like radiotherapy, fuses the outer membrane to the prostate, meaning that subsequent surgery would probably not be nerve-sparing. 

The surgery itself went well and the nerves were spared on both sides. I had no urinary incontinence afterwards and I recovered quickly. I'm now about 9 and a half months on, and in most respects life is back to normal. I go running, walking, travelling, etc. No change at all to all of those things. The main side effect is the ED. Things have been improving slowly but I am still nowhere near back to normal function. It also turns out that I can't tolerate PDE5 inhibitors (Viagra, Cialis, etc.), which play such a huge role in recovery. Taking them has seriously damaged my hearing. It's a very rare side effect, but unfortunately I have it, and that considerably lowers my odds of getting back to decent function. So, it's one main side effect from the surgery, but a big one. Everybody will feel differently about ED, but speaking for myself it bothers me a lot. I'm desperate for it to improve because I just don't know how I would live with it in the longterm. Sometimes, I wish I had sought a second opinion on HIFU.

All treatments will come with side effects and risks, and each person will have different priorities. If it were me and I had a biopsy showing Gleason 6 (and knowing how much the ED bothers me) I think I would want to speak to a HIFU specialist and get a clear picture from them (and I wouldn't let the distance put me off if I had to travel to do so — if something is the right treatment then I think it's worth it). I'd also probably want a second opinion about active surveillance — you might get another 10 years before you have to do anything. However, given your family history, and your own previous history of cancer, I can see why you might not want to go down those routes. AS would leave you with the cancer (which might or might not progress quickly) and HIFU would leave you with a prostate that could develop new cancers. Surgery has the advantage of removing the prostate entirely. Exactly how much erectile function you recover afterwards seems to be a bit of a lottery (although surgical skill plays a big role, I am told) but if they can spare the nerves then you have a decent chance. Of course, the main thing is to listen to the specialists, the MDT, etc.. I'm sorry you find yourself here — it's a really difficult decision to make.

Edited by member 05 Jul 2023 at 17:43  | Reason: Not specified

I'm aware of that potential side effect, but I haven't come across it before. Could I ask exactly what the symptoms were?
Another side effect is acid reflux - unlikely in someone who never suffers from it anyway, but can make it worse if you do.

That makes me think it might be worth patients trying a PDE5 inhibitor before deciding treatment, if the treatment is going to significantly benefit from them. Some surgeons do now start patients on PDE5 inhibitors just before the surgery, but that's not before treatment decision.

Edited by member 05 Jul 2023 at 19:34  | Reason: Not specified

Hello Carl - I'm very sorry about your diagnosis at such a young age.  I can only tell you about my own experience, now aged 75.  In March 2022 I had a PSA test (on my wife's insistence because my father developed PCa in his late seventies and was told he would die of something else first (which he did).

The reading was 10.9 which is high of course (though at my age and with a very large prostate not hugely significant as I later discovered), and an MRI scan followed (Likert 3) and then a biopsy, 5 out of 25 cores with up to 20% involvement "best regarded" as Gleason 3 + 4, T2 N0 M).  I was then offered treatments of hormone therapy (6 months) and RT (20 sessions) on the NHS.

I then investigated HIFU which is generally only available privately and was told it would be possible in my case.  I also sought a second opinion from a consultant at The Christie in Manchester and his reviewing pathologist said there was minimal Gleason 4 involvement and "best regarded" as 3 + 3.  Hence, I'm under active surveillance and as long my PSA levels are around the 11 mark (last reading 9.1) then all good, also a second MRI scan in May 10 months after the first showed "no change whatsoever" in the appearance of the prostate.

Having told you all that about myself (sorry!) I realise you are much younger than me (age is apparently relevant with this slow-growing cancer as most men of advanced years die with prostate cancer than from it) but I appreciate you may well want to be rid of it sooner rather than later and not live knowing it's still there, as I do, but at the end of the day it's your decision to make and have to tell you that I was more worried about the effects of the treatments than the cancer itself!

Regarding HIFU, also cryotherapy which is similar but different, it's still regarded as being in its early days but the treatment is much easier being generally only a day case, but I understand there's a high chance it would need to be repeated. Cheers, Julian

I had to make a similar decision to you around 6 months ago at the age of 42 although mine was a bit more aggressive 3+4.

I listened to what the urologist, surgeon and oncologist said and followed their advice. I did a lot of research on the surgeon and he said that (in his experience) for younger men (ie 40-50) the side effects were much less likely than the statistics (assuming contained, nerve sparing, not enlarged etc). This is only what he said and I am sure some here will disagree.

My oncologists concern was not immediately but 20-30 years down the line if I didn't get it removed. Again just her warning to me. My decision would have been harder at 70.

Personally I was continent from the minute the catheter was removed and ED has not been much of an issue other than some initial shock it is now 95% back.

Hopefully the cancer is removed and it was definitely the right decision for me. Had something gone wrong then I am sure I would be advocating another route. Most of us have an unconscious bias because of our experiences hopefully the consultants advising you don't but at the end of the day it is your decision to weigh up the risk vs reward.

Best of luck with whichever treatment you pick.

Yes age was a major factor. I was worried about recurrence.

Also I am an optimist. For me the ultimate outcome was to have the prostate on a petri dish showing after the biopsy that the cancer was still in the prostate and hadn't escaped and no side affects. As such my ideal outcome could only be achieved through an RP.

This is, simply, a brilliant reply from Londoner. It pretty much sums up my own experience too. At heart, we have probably made the correct decision but thanks to ED? It leaves us with huge doubts over whether its the right one. We are under 50, this s*it happens only to those of us of greater years. Truth is ,it doesnt. I remember the late great Christopher Hitchens, maybe Letters to A Young Conntrarian ( arguably the best book I have ever read!) saying that when we look to the stars to ask, Why me? They invariably speak back to us asking...why not?.

It is what it is.

Im 75-80 % on ED. Im probably lucky. But in truth im angry. I think and have feared for over a year and a half now. That my most intimate part has been breached. Probably beyond any kind of repair.

I have hope and sometimes cling on to the words of people like CJ on here.  His resoluteness and determination, when it comes to ED gives me and im sure, others, hope. More than even he could possibly calculate. But, its always tempered with the knowledge that im considered and rightly so....Lucky.

None of us want this path. 

Jamie.

Edited by member 06 Jul 2023 at 19:54  | Reason: Not specified

It’s worth bearing in mind that if you choose the HT/RT route, the chances are you will very quickly have zero libido, which you may have for up to 3 years, along with some, if not complete, ED during that period. When you finish the HT you ‘hopefully’ should get both back, but how long that takes seems to be very variable.
It’s an odd feeling when you’d rather have a nice cup of coffee than sex(like many women going through the menopause)..hopefully your partner understands and you can still have fun, but it’s NOT the same. I must admit though it must be VERY frustrating HAVING a libido but also having ED.
As I found out from a specialist consultant, Peyronie’s disease(which I now have) can occur with either treatment so it’s really important to do Rehab during the period of ED.

There are many other side effects you MAY get going down the HT/RT route. Hot flushes, brain fog, joint aches and stiffness, fatigue, and as I’ve found out you need to keep active to keep these at bay.

it’s not an easy decision to make either way, perhaps you need to consider which treatment is your best option for getting rid of the cancer, and deal with the side effects when and if you get them. At least you will hopefully be cancer free.

Derek