Surgery or HT?

User

Posted 17 Oct 2022 at 12:55

Suspect my circumstances might be uncommon, but I'll fire away in case anyone can share advice.

I've lived with prostate cancer for many years. Radiotherapy was the first line of treatment and then when it returned seven years ago I had a salvage prostatectomy, which left me with total urinary incontinence. Now, it's back again - still prostate cancer but now in my bladder neck. Because of the siting of the disease and the damage cause by the radiotherapy (scar tissue etc) the surgeon says he will have to remove both bladder and rectum in order to cut away the cancer. This, he says, would provide the best oncological outcome, though the end result would be two permanant ostomies. I trust his judgement, but he's a surgeon and surgery will usually be their default approach. He says that hormone therapy is an option, but can't predict how long it would be effective for. Five years at the most he suggested pretty dismissively. The thought of a colostomy and a urostomy leaves me pretty depressed, but so to does dying prematurely. So it's a toss up between lifestyle and longevity. As I say, I realise these are probably an uncommon set of circumstances - and nothing like as bad as others on here have had to endure - but if anyone has any experience of/advice around this conundrum I'd welcome it, though I realise it always ends up being a personal decision. TIA

User

Posted 17 Oct 2022 at 21:01

Is there an issue with the lifetime dose of radiotherapy? You may have exceeded it in that area so RT may be off the table.

Would any trials be appropriate? In my opinion trials are something to do when all else has failed. Something may sound promising but the fact it is on trial means it isn't shown to be effective.

I'm thinking lutetium177, or immunotherapy.

Given the choice of double incontinence or death, you may take the view that all else has failed and a trial is worth a go.

Dave

User

Posted 17 Oct 2022 at 21:41

I think you need to see an oncologist before making a decision - they will be able to check how much RT you actually had and also what the implications would be of more RT to the area - might leave you needing at least one ostomy anyway. If you can see an oncologist who also knows about HIFU, cryotherapy and proton beam therapy, that would be ideal - these can sometimes be given as salvage treatment and a surgeon wouldn't necessarily be up to date on these alternatives.

If the onco says there is no alternative to surgery or long term HT, and you decide to go for the HT option, you will want to be under the care of the oncologist rather than a urologist anyway. Long term HT is not as bald an option as the uro is suggesting - you might be advised to have early chemo with the HT, or dual therapy of HT with apalutimide or enzalutimide or even chemo with HT and apa. The average might be 5 years but we do have men here who have stayed well for 10 years or more and chemo can be given more than once if you respond well.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Oct 2022 at 10:24

Thanks Lyn. It is my intention to seek the view of an oncologist at the hospital (though presumably they would contribute to the MDT discussion and recommendation??) and the potential scope of the medical treatment you suggest is incredibly helpful to be aware of. So thanks very much for the guidance. Really appreciate it.

There is one complicating factor that I omitted from my original post for fear of making it too complicated and that is the disease is currently blocking one of the ureters leading from kidney to bladder and I therefore have a nephrostomy in place. It will be interesting to know if/and how quickly any chemo/HT combo would clear that disease so I can have the drainage bag and tubing removed as it's pretty uncomfortable and restrictive.

Thanks again

User

Posted 18 Oct 2022 at 10:27

Thanks. Don't feel as if I'm in the last chance saloon just yet!! If necessary I will have the surgery, but as I say I'm hoping there might be some proven medical alternatives

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