Possible biochemical recurrence.

I have not yet fully decided, and want to wait for the doctor's formal letter. But my thinking currently is this:

I chose my surgeon for RP based upon his preference for conservative surgery. When we discussed, immediately before the procedure, how I would like him to approach the surgery, I elected to assume some risk in return for the chance of preserving better function.

After biochemical failure, I did not immediately rush into radiotherapy and instead waited for a PSMA PET scan to identify precisely where the cancer was.

There is the consideration that current medical thinking does not make a one shot game EBRT intervention to the pelvic area. Furthermore, with every passing year, treatments are improving. Even in the time that I have had PCa treatment options have changed, there will probably be other techniques and treatments in five years time.

If I now elect an approach that is treating tissue that is not demonstrably diseased (lymph nodes) and having ADT, with almost guaranteed side effects, in return for a 3-4% improved chance of long-term survival, I will be departing from my previous strategy.

As the doctor said to me yesterday, having radiotherapy without ADT is not a crazy idea.

Edited by member 25 Oct 2022 at 08:39  | Reason: Not specified

Well if he doesn't suggest it, you will need to politely insist

There is a prolific American doctor on Youtube, who has a lot of videos relating to all matters PCa. In one of them, he says "just wanting it out is absolutely the right decision for most cancers. PCa is not one of them, due to collateral damage considerations"

Before surgery, I consulted with a number of surgeons to gauge their opinion and was quite surprised by the lack of consideration given by some of them to QoL. One of the leading surgeons had (and may still have) the comment on his website "you don't actually need a prostate, unless you want to have children". Righty ho.

I am sceptical about ADT. I think there is plenty of research that points to it offering the greatest chance of a cure. But at what cost?

Always one for cynicism, I am also aware that two years of ADT puts you at least two years down the road before you find out whether EBRT has worked, by which time the onco involved is probably long forgotten!

I am wary about a temptation to make the data fit my preferred course of action. However, my view is increasingly that PCa is under diagnosed and over treated. With that in mind, and given my previous choices, it seems sensible to me that accepting a level of risk, in return for the fewest side effects, is the way to go.

I recognise that, if I take a super conservative course of action, I may put myself in a position of playing whack-a-mole with PCa for the rest of my life. But then, I don't know how long my life is going to be, and there are plenty of factors that may make it a relatively short one. Maintaining a good QoL is therefore of paramount importance.

I am seeing another onco in ten days and, providing he is happy to play ball, I am going to go for treating the visible recurrence only, no ADT.

Was he given tamoxifen with the bical?

This evening I saw the local onco, recommended by the Marsden.

He is happy to do EBRT without hormone therapy, because he understands my reasons. He also seemed to give the impression that it doesn't matter that much.

He does, however, want to include the lymph nodes. He said that whilst theory is that adding them in increases side effects, in practice they have few issues. He also said that whilst lymph nodes can be treated later if PCa crops up there, rarely do they see a patient cured if they have to do it. It usually pops up somewhere else later.

He said that I have:

5% chance of worsened bowel function

5% chance of worsened urinary function.

50% chance of worsened erectile function (I didn't like this stat).

Royal Marsden said I'd need 4 weeks of EBRT, this chap is saying 6.5 weeks. Which will go on past Christmas.

He concurred with the Royal Marsden that, if I am not going to go for ADT I need to crack on. So I've signed the forms and start in 2 weeks.

Edited because this site's paragraph spacing is odd.

Edited by member 03 Nov 2022 at 22:34  | Reason: Not specified

Yes, it seems that it's now possible to target lymph nodes more accurately and thus have less problems with overdoing it. I had three targeted specifically and a lesser number [must ask next time, how many] treated as "elective". Possible side effects from destruction of too many lymph nodes include lymphedema which manifests itself with symptoms like swollen ankles because the nodes aren't performing their task of returning fluid to the bloodstream. In reality I had no signs of lymphedema so recent advances in the delivery of RT are making a difference both in treatment and outcomes.

Along with improved delivery of RT it could well be that the need for HT afterwards has diminished. My oncologist was still recommending 3 years but I've pulled out at 2 and even that might not have been necessary. I guess the difficulty is, that it takes about 5 years before it's possible to have definitive results that prove a treatment has been more successful than one that has gone before, even if the early signs are good

[press enter once only 😀]

Jules

Edited by member 04 Nov 2022 at 01:29  | Reason: Not specified

One disappointment is that the Royal Marsden said I would need 4 weeks of EBRT. This chap locally is saying 6.5 weeks. I queried this with him and he shook his head saying, we see no evidence for 4 weeks.

I am a bit tempted to go back to the Royal Marsden and ask the consultant whether there is any evidence that I can put forward to reduce the duration. I don't obviously want to get into a "...but the Royal Marsden said...." situation, but at the same time I don't want 65% more days of treatment than may be necessary.

Or should I just be quiet and take the advice locally?

I'd suggest take the advice. This treatment costs a packet per session and occupies equipment that's in high demand. There's a great deal of pressure on them to reduce the number of sessions and hence to save money etc. If, despite that, they're still recommending longer treatment it's probably with good reason.

Overall RT is not difficult to get  through

Jules

Best of luck with your RT. I can really understand why you have decided to not have HT as QOL plays a huge part. I suppose we’re all just a bit scared not to go with the more tried and tested routes, but I think if rob needed salvage treatment we would really consider the same path as he really wouldn’t like the idea of more HT and for longer than he had previously. Glad they’re getting things moving quickly for you too 👍