Opinions lads please

Hi Steve some regreted the prosectomy because off continance and erection problems that probably doesn't happen to everyone that has had a prosectomy to give a fair balance but most seem to move on easier after rt HT  but like you said it doesn't suit all 

Roughly speaking, 1/3rd do prostatectomy, and 2/3rds to radiotherapy, so more people do go for radiotherapy.

Most people are happy with the choice they made, even when it doesn't turn out as well as they hoped. This is a good thing, because dwelling on decision regret is definitely a bad thing.

We don't get a representative sample of treatments and side effects on this forum, or any other support group. Remember in the UK about 40,000 men per year are being diagnosed. For some the disease is insignificant, they will die of something else, for others it is too late for treatment. I would guess about 20,000 get some form of radical treatment in the year. On this forum we see perhaps a thousand people a year. So 95% of people being treated in the UK we don't really know what's going on, they may be very happy with their treatment or very sad. The medics do follow up patients, so if something dreadful was going wrong we would probably hear about it. So I'm going to have to guess that at least 95% off people are happy with their treatment and just get on with their lives.

If one is looking for the best chance of 'cure' for a T1 or T2 it is almost certainly prostatectomy. And for a T3 it is almost certainly RT(HT). 

Now if you're only interest in 'cure' as an outcome, you could start thinking 'out side the box', why not remove the penis, testicles and lower bowel, just in case, or RT the entire body and castrate instead of HT. The answer of course is side effects. We are looking for a cure, but only within acceptable side effects.

When you add in side effects, the remaining life expectancy becomes very important (we only need the 'cure' to last a few years). The severity of side effects, e.g. incontinence, is severe, but the probability is not too high (remember about 95% of people are not complaining). The factors in knowing the best treatment are complicated, and no-one knows what they all are when they have to make a choice.

When people are first diagnosed with cancer and come on this forum, they are trying to avoid death, their focus is often on the most aggressive treatment. I try and make posts to remind them they will never avoid death, at best they can postpone it, and that they just have to live the best life they can until the grim reaper arrives. 

Thanks peter I am sure you live to 90 and beyond I met a guy diagnosed last year with a psa off 1500 and met him again last week it had dropped to 83 still high but still here and looking quiet well thanks for your comment just putting it out there and have had some really good feedback thanks again gaz 👍

Edited by member 03 Jul 2023 at 17:26  | Reason: Not specified

We have a couple of friends recently diagnosed at or around the age of 50. Both were diagnosed with a T1/T2 and a G7. Given all treatment options, both opted for brachytherapy with HT. We also have a friend in his mid-50s who has opted for IMRT / HT - I don't know his G score or staging. They have seen John go through failed RP and salvage RT; they know about the ED and the injections and vacuum pump. They certainly know that he mostly regrets having the op.

I think that, generally speaking, there is an emotional response of
a) get it cut out', followed by
b) 'well if cutting it out doesn't work there is a second bite of the apple' , followed by

c) 'at least with the op you know quickly whether it has worked' , followed by
d) 'the side effects are probably quite rare and I will be okay because I am young."

Some men only meet the urologist and don't know that they can ask to see an onco before making their decision. Some men hear the 'young men = RP, older men = RT' mantra and don't question that further. In the case of our two brachy friends, they knew from John's experience that the side effects could happen to a younger man and both are professionals who work in a risk and bias context. And, statistically (& I think crucially), men are diagnosed later in the UK than in the USA or some European countries so RP is not on the table for them anyway or it would be with planned non-nerve sparing.

PS I note Decho's comment that none of the RP men in his support group regret their decision and I am surprised at that - the couple of friends we have who had RP have said that, given their time again, they wouldn't have done it. I wonder if Decho's group are a really lucky bunch or whether it is hard to admit regret in a group where everyone is trying to make the best of things?

Edited by member 03 Jul 2023 at 18:18  | Reason: Not specified

Excellent post Lynn and there’s a lot of truth in it. It’s only a small sample obviously in the Group and many of them are fairly recent to surgery, so long term things may be different. Similarly those on the HT/RT route have mostly had treatment recently or or awaiting it, but I certainly can’t remember meeting anyone who by choice has gone down that route….maybe they are influenced by others in the Group who’ve had surgery, as they are so enthusiastic about their treatment…..which is a bit dangerous really. Often at times I’ve wanted to challenge them but that might not be good for the group?

Although I’ve had a lot of side effects from HT(RT was a breeze for me) it’s not stopped me living my life and I’m determined as hell NOT to. I will do what it takes to get through this…as I said I didn’t have the choice so there’s no point looking back, only looking forward and being proactive in tackling any side effects. Todays gym session was good, going out for a walk shortly and then another Epsom salts bath!

Going back to the Angry!!! post, today my state has been ‘ok’ tomorrow will be ‘happy’ I hope as I am going for An early morning swim and then to Maggies for the Living with PCa course 😊

Derek

Hi decho I refused a prosectomy and went down the radiotherapy hormone therapy route and have no regrets would do it again tomorrow gaz 👍

Thanks for your reply Chris have looked forward to your informative posts since I joined the forum it's good to see you are continuing to do well like me after similar treatment long may it continue all the best gaz 👍

Thanks decho I understand your predicament my psa was high at 24.9 and Gleason 9 but underwent pelvic radiotherapy before every session off prostate radiation can't understand why they couldn't give you pelvic radiotherapy as I must have been in a very similar situation can anyone else shed any light on why decho couldn't have similar treatment  hopefully your radiotherapy will have sorted the problem anyway hope the epsom salts are helping thanks gaz 👍

Thanks for your reply j-b hopefully you are ok now just getting everyones thoughts on both treatments to help anyone through the treatment options thanks for everyone's replys 👍

Thanks for the explanation lyn it makes a lot off sense thanks for your continued wisdom gaz 👍

The definition of incontinence is a difficult issue.  I have been using a small pad since my recovery after prostatectomy 12 years ago. Strictly speaking I am incontinent because if my wife hugs me I tend to leak!, but otherwise I can go a whole day without a leak. Occasionally I forget to put the pad in and only realise when I go to the loo or at night when I undress. At night I only need a flannel to catch drips. Did anyone want to know this?

Edited by member 03 Sep 2023 at 18:26  | Reason: Not specified

Definitely a true statement. There aren't a great deal of useful statistics published.

The following are more or less correct: 40,000 diagnosis per year, 12000 deaths per year are fairly useful figures. 98% five years survival even if you do nothing. 70% chance of cure(!) from first treatment.

Once you start asking percent continent etc. or bowel damage from RT, then you have to start defining continent, damage, etc. (I guess live or dead is easier to define). Anecdotal is useful if you can get enough anecdotes (from a random sample). It also gives people scenarios they can do thought experiments with, at least after reading your post on continence people can start to picture a whole range of scenarios they may have to live with (though with little idea of the probability of any scenario).