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.

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. 

I was lucky enough not to have to make a choice. Sometimes the disease is such that only one treatment path makes sense.

If you click on my avatar and scroll half way down my profile you will find links to various threads which may be useful.

BTW humans don't make logical choices, they make emotional choices and then look for evidence to justify their choice and make it look logical.

Like when my wife, said, "I do".

Twenty seven years later, she's still trying to justify it. 😁

Edited by member 13 Jan 2025 at 18:24  | Reason: Mistake

I think many of us are floored by the expectation that we have to make the decision as in...you want me to decide!?!?  You're the experts!!!

I read widely in the time available to try and find the best option that suited my age (61), Gleason (4,4), staging (T2C) and health (generally fit). As others have noted, there isn't a clear answer more a general trend of treatment options and it became a question of multiple calls with various consultants to talk through treatment plans, durations, side effects etc. 

What finally swung it for me was the oncologist recommending surgery. I was leaning that way anyway due to the speed and clarity of RP, but he was admirably clear on the pros and cons of surgery and RT/HT. 

Good luck with whatever path you choose. 

I was 52 when diagnosed.

The team pushed me towards surgery. Why?

Age, likely to live long (well hopefully) so if the cancer returns I have other treatment options available over the long term

Fitness. Hence they considered I would recover quickly. I did.

Cancer was contained. So likely good outcome with good chances the treatment would be curative. 

If you are unsure always worth discussing with the uro-oncology nurses, or the wonderful nursing team at PCUK.

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 07:21  | Reason: Not specified

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 04:38  | Reason: Not specified

Well I didn't choose the RT/HT route, but because of the progression of my cancer the MDT chose that route for me. I would have probably chosen surgery, but that's a man thing. If there is a problem grab the biggest hammer and hit it hard (I have an old car and it now has quite a lot of dents in it). Fortunately the MDT team said, "with your cancer, RT is the only way to cure it". 

I'm more than happy with the RT/HT treatment 7 years later there is no evidence of cancer.

Hi Keith 

sorry to read of your diagnosis.  
As I’m sure has been said already, each of us is different and would respond differently to either of the treatment options facing you. Also, no one knows precisely how anyone would respond to treatment, especially re side effects.

I was diagnosed as a fit 58yrs old, g s of 7 (3+4) , PSA of 5 and PC that’s contained within the capsule. I opted for RARP in hope to be one of the 70+% that would be cured. I had no incontinence, Catheter for 1 week, 50% erection on day 3 post op lol. First 2 PSA post op not detectable, but unfortunately for me the 3rd PSA (9 months post op) was 0.05 which doubled to 0.1 three months later.

Onco prescribed RT + HT.  My plan was to start HT a month before RT but luckily had PSA couple of days before I started HT which came back unchanged from 0.1 so Onco phoned on the day I started HT not to take HT as PSA hasn’t doubled. So only took 1 tablet.  Since completed RT in July 2024 and all side effects has resolved so far. First 2 quarterly tests are not detectable.

From what I’ve read, my experience is pretty common for most of us. 

The main factors that tend to lean people towards surgery are Age, body weight, physical fitness especially strong pelvic muscles, the disease (contained within the capsule), Lowish Gleason score.  Also, if surgery doesn’t provide cure you can go for salvage (RT +\- HT).  I fit this so went for cure with surgery.

My understanding is if RT/HT or Chemo was first treatment option and PC returned it makes it difficult for surgery as secondary treatment. That was one of my considerations too.

Having gone thru this, I think HT is prescribed as a precaution if the starting PSA is low-ish and they suspect PSA will / may continue to double. The problem is it’s difficult to predict with high certainty. 

I assure you that we all felt like you will be feeling right now at the start of our journey.  Also, be assured that you will go through it and emerge on the other side 🤞🏽. 
Good luck.

Edited by member 25 Jan 2025 at 17:32  | Reason: To follow conversation

- 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?)