Factors impacting treatment decision making and decision regret. 🤔

No regrets here Adrian. Like yourself, I was diagnosed with low risk, well contained T2C cancer. Active surveillance was recommended, with surgery the preferred alternative when/if it became necessary.

Fast forward a few months, and a few elevated PSA results, and a second MRI showed considerable progression, capsular breach and a lot of not very well contained tumour. now unless they got it very wrong first time round, this change had occurred in some 9 months, which put the wind up me a bit!

Picked one of the best surgeons I could find (very lucky to have private cover), and the rest is history (hopefully). Yes I'm still incontinent a year later, yes I suffer from ED, and yes, given various factors they discovered during post op histology, it is quite likely to come back at some point. However, for now, I am rid of the thing, and would make the same decision if I had to do it again.

Adrian

I was offered a choice between prostatectomy or two different types of radiotherapy (i.e. conventional or bracytherapy) with prior hormone treatment. My reasons for choosing surgery were:

a. the research I did at the time suggested that survival rates might be a bit better with surgery (though I now think that this may have been true historically but not any more)

b. I was very nervous about the prospect of numerous visits to hospital, especially in the middle of the covid crisis

c. I had the (possibly misguided ) view that you could have radiotherapy as salvage treatment after surgery but not vice versa.

As for regrets, shortly after making my choice I saw my first Dr Scholz video in which he argued that radiotherapy was now a better choice mainly because it had improved enormously over the previous decade and the side effects were less troublesome. For some time after that I hated Dr Scholz for making me think that I might have made the wrong decision !

But I gradually came to appreciate that, while his dislike of surgery may be a bit over the top, he is a very valuable source of good information about all aspects of prostate cancer.  It also occured to me that his comments might be more applicable to the USA than the UK. So I don't regret my choice of treatment but I also don't hate Dr Scholz any more !

Best wishes

Kevin

So true Adrian regardless of the choice of treatment, both before and after treatment!

The prime difficulty has to be that we're so uninformed before we have treatment and there's often little time to make a decision, at a time when we're very stressed.

If the specialists who treat us could spend an hour on delivering an information session to prospective patients, it would be hugely helpful, but even then leave unknown unknowns. Maybe that's what Andy does?

The other thing is, that at the margin between being a urology person and being an oncology person, there's something of a border dispute between the experts in each field, so for us mere mortals to make a judgement is always going to have some personal opinion in it.

Scholz is always interesting. His use of HT with other drugs which modify its nastiness is something to aspire to, though I think Andy has pointed out that it would require a lot of monitoring and hence be too expensive for your average Joe.

As for psa watching, it's a little demon that will always sit behind each and every one of us.👹

Jules

Jules

Leading up to my diagnosis, like most of us, I knew where it was going.. about a week or so following my biopsy, I received a couple of phone calls inviting me to three appointments. The first was Nuclear medicine. I was given names for the other two so I looked them up and they were an oncologist and a urologist. I was sat in nuclear medicine when I got a text reminding me to attend an appointment at the Macmillan Centre in a couple of days time. Meeting the oncologist, first thing he said was "so, do you know why you're here?" 

Anyway, I did some reading leading up to diagnosis and was definitely in favour of Active Surveillance. I wanted to kick it into the long grass but it was not to be, apparently T2c 4+3=7 meant AS was out of the question. The oncologist said that the MDT recommended surgery, which floated my boat. The cancer was apparently pressing against my urethra which meant that If I went down the RT/HT route, I'd need another procedure. Also, as I saw it, I didn't fancy a couple of years on HT and possible bowel damage. So nerve sparing surgery was the only way out, although the oncologist did say to come back if I decided on RT/HT. 

I remember being really positive leading up to surgery, different story afterwards though. I didn't suffer any incontinence, but ED was the most difficult thing to get my head around. 

After about a month I felt really flat, and despite returning to work and a holiday in the Canaries, my mood dropped a couple more notches and I was having buyers remorse. Irrational thoughts like why didn't I insist on AS and enjoy having a functioning dick for a few more months. A couple months later I had some counselling which led to acceptance and allowed me to kick myself up the arse and get on with life. A few more months and I was starting to make progress on the ED front, I'm sure relaxing a bit helped.

Now, five and a half years later and almost three from the start of SRT (yes, I didn't want RT,  but dodged HT) I've had a good outcome and am happy. Orgasms aren't much to write home about but the wife is happy without the post coital sloppy trudge to the bathroom. 

In conclusion, when I read what others are dealing with and have been through, I'm very lucky. If I met my early 2020 self, I'd kick myself up the arse for feeling so sorry for myself and putting my Mrs through it.

Cheers,

Kev.

Edited by member 25 Jun 2025 at 08:15  | Reason: Typo

It’s been an interesting read for me. Reading the forum over the past few months I’ve seen many diagnosis’s similar to mine having been treated with RALP. I was G9(4+5) T3a. I still believe in my case I didn’t really have a choice. The MDT recommended the treatment I’m on and the surgeon in short said he thought the multi modality treatment was the way to go as well so went down the brachytherapy/EBRT/HT route. The main reasons being they thought there was a high chance of needing EBRT in the future and side effects ( most likely non nerve sparing). What was interesting was my age came into this decision. Personally I thought the younger you are the more you are pushed towards surgery but not in my case. But what I am learning is that diagnosis’s may be similar but our PCA can be very different.

Do I regret going with the decision and not overruling the people in the know, I guess only time will tell but at the moment apart from the fatigue, muscle loss and occasional low mood from the HT ( sounds like the sketch from Life of Brian I know) I’m comfortable with the direction taken.

Take care all

Stuart

Well I was lucky, I wasn't offered a choice. Well I expect I was offered a choice but it was made clear by the MDT that, the only option that had a chance of working was HT, EBRT and brachy.

I don't believe anyone who is offered a choice can make a logical decision. They have already made the choice based on emotions and feelings. As Adrian said in the first post, they then just select the evidence to confirm their choice.

I'm not saying an emotional decision is wrong, 50% of time it may be the same decision logic would have lead you to. Also satisfying our emotions is all anyone ever aims for in life (except Dr Spock from Star trek). So the emotionally satisfying decision is probably the right choice, even if it kills you.

To elaborate on why I think patients can't make a logical choice. One of the biggest factors is you are asked to make this choice when you are under threat of death. A death threat tends to elicit an emotional reaction. Most threads on here start with "I'm worried", "fearful", etc. not many start with "I'm logical". The occasional thread which does start with "I'm logical and looking at the options" then lists ever reason why surgery is the right treatment for them. Why is it surgery? Again because we are masculine and we know that when under attack we must fight, and we know that sharp metal knives are good for fighting, again this is all emotions.

So the point of this post is to try and help people who find themselves in the position of making a choice, realise how poorly equipped they are to make that choice. An MDT is far less emotionally involved in your case than you are, if they make a recommendation it is far more likely to be influenced by logic than any decision that you make can be.

I’ve no regrets - I had surgery and I’ve no continence (well less than I had) no errections and now no cancer (fingers crossed!). Of those 3 only cancer could kill me so I live with the other 2. I was given a lovely menu of cocktails to choose by my nurse - surgery, Brac and HT/ Radiotherapy. I considered all 3 and went down the surgery route. I wanted the cancer out, I had options of radiotherapy if I needed mop up at a later date and somewhat more random I work in a small office with 2 50 year old women. If I had HT I could not have all 3 of us going through menopause ! The clincher for me was when asking the radiologist she advised in my position to have surgery and was very open about it.