Sorry for what you're going through, and your thoughts are similar to many of us at that stage (certainly mine, although my diagnosis was at a different point on the scale).
Firstly, since you are being offered Active Surveillance (even if you ruled out taking it), there's no hurry in choosing your treatment.
It's worth asking to talk with a prostatectomy surgeon. Ask what they think is the likelihood of long term incontinence, and what is the likelihood of permanent erectile dysfunction in your case. If the surgeon performs Retzius Sparing surgery (which most don't - the standard robotic procedure is called retropubic surgery), your recovery of continence is likely to be faster (although after a year, there's no difference because the retropubic surgery patients have caught up to the same level). You could ask your CNS if any of the local surgeons do Retzius Sparing and if you could specifically talk with that one. Maintaining of natural erectile function depends on being able to do nerve sparing surgery and that will depend where the cancer is inside the prostate, so you should ask about that. Unfortunately, they won't be able to guarantee nerve sparing until they actually get to see the prostate during the op, and even with nerve sparing, there are no guarantees of preserving erectile function. There is a procedure called Neurosafe or Frozen Sections (same thing) which increases the chances of being able to do nerve sparing surgery, but the only hospital which offers this on the NHS as far as I know is the Lister at Stevenage.
You should have a similar talk with the focal therapy surgeon. An extra thing to understand with focal therapy is if they will be clearing all the cancer spots, or just the largest or more aggressive ones. They can usually only do a maximum of two, in which case they do the two largest or most aggressive, and you go back on to Active Surveillance if there were any additional ones. In practice, you go back on to something similar to Active Surveillance in any case, because prostate cancer often doesn't just spring up in one spot in the prostate and it can spring up elsewhere later on. Sometimes additional focal therapy can be used in that case. Sometimes a different whole-prostate salvage treatment would be required such as salvage prostatectomy or salvage radiotherapy. (Salvage means it's not the first treatment, the first treatment having failed to cure.) Salvage treatments often have poorer outcomes in terms of erectile function and continence than if you'd had that treatment as your original primary treatment. For salvage prostatectomy, you would definitely want to go to one of very few surgeons who specialise in it.
Always be weary of talking with a clinician about a treatment they don't do. While it might be interesting to hear what they say, many tend to think their treatment is the best and they actually don't know much about the other treatment, so always get view from those clinicians who do the treatments you're interested in.
You can take Active Surveillance while you consider the surgeons' responses if you want longer to do so. Anyone on Active Surveillance has the right to switch to active treatment at any point.
It's also worth pointing out that Active Surveillance is not without risks too. Sometimes, the initial diagnosis wasn't correct and missed something more serious which wasn't eligible for Active Surveillance. That doesn't matter as much with prostatectomy or radiotherapy since the whole prostate is treated in any case. This does matter for Active Surveillance and focal therapies. The focal therapy centres know this and will often do more detailed imaging to be more sure of the diagnosis, but that isn't usually done for Active Surveillance. Also, Active Surveillance is not without side effects over a long term. Biopsies do impact erectile function, usually by too small an amount for anyone to notice, but with repeated biopsies over many years, the effect seems to be cumulative, and men on Active Surveillance for many years do report reduced erectile function over men not diagnosed with prostate cancer. There is also a small risk of going metastatic while on Active Surveillance, due to the biopsies having missed something more serious.
In summary, focal therapy probably has less risk of side effects in the immediate future. It could turn out to be completely curative, but that's the data we don't currently have on focal therapy. However, if you need whole gland treatment in the future, the risks of incontinence and impotence are higher after that than if you had the whole gland treatment in the first place, but you might have gained some years of very low, if any, side effects before that happened.
Also, as a younger man with prostate cancer, you are looking for 30+ years in remission, which is a tall order from a single treatment. This means you shouldn't be surprised if you needed another treatment at some point in your lifetime, and for that reason a first treatment which has some good follow-up options would be good. That would apply to both focal therapies and prostatectomy as your primary treatment, but less so for radiotherapy which you could keep in reserve for when you're older. Having said that, brachytherapy may be another possible choice in your case, and because it avoids spilling much radiation outside the prostate (particularly with a rectal spacer), it is sometimes considered appropriate for younger patients.
I hope that's helpful in trying to weigh up options. No one can tell you which option to take, because it's a personal thing. You can have two men with an identical diagnosis, but with different factors which are important for them and therefore different treatments might be right for them. Sadly, there is no zero risk option.
Edited by member 03 Dec 2023 at 12:12
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