What drove your treatment decision?

Me and many others would agree with you. It seems ridiculous that in this day and age no one seems prepared to put their head on the chopping block and say, "This is best for you" 

The reason I chose surgery was simply because it involved just one overnight hospital stay instead of radiation which involved 35 hospital visits over 7 weeks.  

I hate to say it, but no matter how much research you do, there seems to an element of luck involved in how well your treatment goes and how well you recover. 

You're probably already aware, that this site tends to be biased towards problems with treatment and poorer outcomes. Most blokes, whose treatment and recovery went well will probably never post on here.

Hi Mark

I am no medical expert but I think focal treatment would not be recommended in your circumstances because you have multi focal disease spread throughout the prostate. Focal treatment is best suited to men with uni focal disease or just one area of higher grade disease that can be focussed on and the other lesions managed via Active Surveillance.

I suspect given the nature of your disease you will be offered radiotherapy or surgery. Given your age and if the cancer is contained within the prostate or only just broken out of the prostate I  expect you will be guided towards surgery. The ultimate decision however will be yours to make.

All the very best for the future whatever decision you finally make.

I don't know, but I expect making a recommendation which doesn't work out as hoped exposes the trust to litigation and the NHS lawyers want to defend against that. Hence we have to choose our own poison.

Thanks again for the post - it's a cliche but it is very helpful to hear from others who are going through the same stuff

Good luck to you

Mark, like you I thought I was fit and healthy until I was diagnosed with with Prostate Cancer 2.5yrs. I was lucky to be able to reach out all 3 experts Focal, RT and Surgeon. I looked at all 3 options and examined the pros and cons. My goal was to be rid of of the thing and hopefully give myself a better chance of cure. What I found strange was that each "expert" was ok to proceed! The RT specialist had some misgivings owing to the size of my prostate, but she was still happy to start me on the injections. The same for the surgeon and the Focal guys. Like you I was logical and looked at the 3 major objectives, get rid of the cancer, no incontinence and no ED. I was told (with surgery) 2 and 3 were inevitable in the short term and would resolve itself in the long term. My main objective was 1, and thankfully my PSA remains undetectable, however incontinence is only bedtime, and can control that with my diet. As for ED, it is an ongoing battle (again there are workarounds) - again cannot bring myself to inject my todger before sex, I also thought tablets would automatically work - I only found after surgery that you can pop all the viagra/cialis in the world, there is no guarantee after prostectomy! So in the end, my reasoning for electing for surgery was a bit flawed, but knowing what I know now, I think I would still have chosen surgery.

It may be fear of litigation, but I suspect it is basically ignorance! The surgeons and oncologists know that half their patients will end up (after their initial recovery) with only minor issues of incontinences and/or ED. But they can't predict which half!'

Sorry, that doesn't help Mark. It is a bit of a gamble, and only the patient knows how to place a bet on their future quality of life. And many of us here have had to do it.

However a couple of other points to consider - whether they are helpful or add more confusion I can't promise. (1) Radiotherapy technology has advanced considerably over the last few years (someone mentioned that above) so it is likely that current side effect risk is less than that quoted which - by definition - is based on the technology of ten or more years ago. (2) Complete surgical removal of the prostate means your PSA should drop to zero (or the detection limit of the lab) which means subsequent monitoring will pick up any residual cancer very sensitively, and action can be taken. It all depends on what your particular biggest worries are.

Mark I was in your position nearly 2 years ago. Firstly everyone is different and some have good or bad experiences. I chose surgery 1) I wanted it out 2) if not successful then there was a fall back to radiation 3) not a major factor but I work in an office of 59 year old women and we could not have someone else going through menopause at the same time if I chose hormone and radiotherapy! The clincher for me was when I saw the oncologist and she said in my position based on age fitness etc she would go for surgery. I had surgery April 23 - it has  been easy. I still need a pad a day to catch the unexpected leaks and even though I was 50% nerve sparing I have little natural sensation. But my last 2 psa tests have been <0.001 so that’s as good as I can expect. I suspect that from a medical perspective I am an average recovery but have nothing to base that on. Do I regret my decision - no life goes on and you adapt. Good luck. 

Sorry to hear this.

Try and act rapidly as these are type 4 cells so speed is of the essence. The good news is if you get it removed while localised then life can be pretty much normal post surgery. 

I’d recommend finding a top notch high volume (>100 per year) surgeon with a publicly proven track record. NeuroSAFE is prudent during surgery as gives near real-time visibility on margins while you are open. Retzius sparing approach to RARP is a good option as quicker recovery times…it’s technically more complex so a skilled surgeon really matters in this case.

I chose Guys London Bridge to have my op. It’s two hours away so bit of additional hassle but I wanted the top funded uk centre of excellence, top kit, top surgeon and crash recovery facilities on site. All these were met/exceeded. I stayed in London Bridge Hotel next door the night before as didn’t want to panic travelling at a ridiculously early hour as check in was 7am.

On the plus side surgery was a doddle and less drama than when I had my tonsils out as a kid….i had to keep reminding myself I’d had major surgery so not to overdo things.

i was dry after catheter removal at two weeks . Then minor leaks and dribbles after this for 5 weeks where I needed pads. After this all good and just occasional squirt when coughing and sneezing etc

I was back to the gym after 3 months and that was all fine. Just don’t train on a full bladder. I don’t need pads at all.

im just over 5 years post op and still PSA undetectable. Technically with cancer I don’t think cure is the right term but remission is more fitting but happy days either way.

ED not too much of an issue which tends to be fairly hit n miss post surgery from what I see. It’s not the same as pre-surgery but mostly I have about 90%-100% of function unless I’m tired. To bridge the last 20% in that case is as simple as popping something like 20mg viagra.

Please don’t feel too concerned about surgery as it’s not as big a drama as I had worked myself up to believe. It’s a massive head-spin in the final two weeks before surgery but you get there.

So happy days this far. My primary goal was always to be cancer free as all other considerations are secondary and can be managed. At the very least I’ve bought myself extra time so if the cancer does return hopefully the next gen treatments will be online.

Best of luck and use this group as a sounding board as much as you need as it was absolutely critical when I went through the process.

Btw surgery allows radiotherapy to be kept a back stop should it be needed for salvage recurrence. 

Edited by member 19 Jan 2025 at 06:21  | Reason: Not specified

Hi Mark

I am also from Chester but now living in Cornwall. To keep it short and sweet, diagnosed in March 23 with a T2 active surveillance for six months. I then had a face to face to look at my histology and it was multi focal (T2c) close to breaking out but contained. I opted for surgery as radiotherapy can still cause ED and incontinence but with additional side effects. Had surgery 6th of December and since I had the catheter out have been dry. Since day one at night and five weeks later I have very minimal drips/ leaks during the day. Had my post op appt today and the post operative histology showed seminal vehicle involvement and my final staging is T3b. As far as it goes I am cancer free with clear margins.

My experience of the surgery and follow up was all good and I am close to being back to normal. I believe RT and HT is a bit more drawn out and rat runs the risk of further cancers down the road. At the end of the day the choice is yours and yours only, all I will say is do the research and make an informed decision and don’t focus too much on the worst case scenarios, the doctors all seem to want to emphasise the worst case for some reason. Good luck.

Keith,

Each case does of course have to be treated on it's merits and any contraindictions taken into acoount but one important factor the clinitions consider is a patient's age and physical condition. So mostly where men are suitable, they tend to advocate surgery for younger patient and RT for older men. The reasoning here is twofold, namely because younger men have a longer expectation of life and surgery means there is less chance for cancer to develop over the long term. Secondly, robotic surgery is now more common and a younger man is in most cases more likely to cope more easily with the stress on the body due to the way he is suspended during the operation. Conversely, the older man is rather recommended RT which he can more easily cope with and because his life expectation is shorter he is less likely to be affected by another form of cancer being triggered over fewer remaining years. There are cases regardless of this where some younger men have RT and older men have surgery but the surgeons become less inclined to want to operate, particularly if a patient is not considered really suitable. So there is some cross over between what is considered young and old. Also, some men tend to become physically older than their age whilst others remain much fitter and stronger, so even considering just the age factor it can be a variable.

I believe what you say is nearly right in terms of the side effects in so much as surgery does sadly increase incontinence in a few men permanently and for many for a period of time as it improves. I don't think RT does this much at all, although it can produce other side effects as a result of the radiation but also because of the HT that usually accompanies it. As regards ED this often affects men. immediately after surgery but in many cases improves over time, sometimes by pumps and pills. On the other hand ED does not happen immediately after RT but gradually develops over months/years. The accompanying HT does play a principal part in this - a loss of libido you could say for most men.

What adds to uncertainty is that neither the clinician nor the patient know beforehand the degree and extent of side effects and even more importantly how successful teatment will be for an individual. There have been many cases on this forum over the years when a member has been given an expectation of so many years but has exceeed it very considerably. Men can respond so differently. We also have to remember that new techniques, equipment and new ways of treating have been introduced over recent years, so results should improve as the long term analysis will undoubtedly show. One thing is definite and that is that early diagnosis gives a man the best chance of successful treatment, although even so a man nearing the end of his natural life span may reason he would rather avoid side effects of treatment at that time and take his chances of dying of something else.

Edited by member 24 Jan 2025 at 03:38  | Reason: Not specified

I was 58 on diagnosis, pretty fir, good weight etc.

I suffered plenty of side effects from the HT (Zoladex), probably most of those expected. Some bladder/bowel issues from the RT.

My RT was in 2016, my HT finished summer 2018.

Took a while of course for side effects to go but they dir and the treatment has done what it was supposed to, accepting tne PCa may come back.

Knowing what I know now I'd be 'happy' with same treatment (although times change/progress etc).

I was gleason 8 (upped to 9 after TURP) with PSA 21.

Peter

- would an inserted Gel Bowel Shield be used

- who would give support on side-effects (e.g. ED) - hospital or via GP (might vary by area?)

An article in the Times a world famous professor says Robot is;

“It’s fantastic technology in that it’s led to less pain, less bleeding, quicker recovery. But, compared to open surgery, where you make a big cut, studies show it hasn’t reduced the risk of erectile dysfunction or urine leakage.”