Does locally advanced result in no nerve sparing?

There are no silly questions - if you're wondering about something, it's a valid question.

T3 doesn't automatically mean no nerve sparing - it will depend where the cancer is close to the surface or breaches the surface of the prostate. However, the most common place for prostate cancer is where the erection nerves are, but often only on one side. So you would need to ask the surgeon how likely they think nerve sparing is in your particular case. Of course, there are no guarantees of nerve sparing, or that erections will work even with full nerve sparing.

Some people successfully use the pump for sex, but I think it has to be said, most people don't find it very satisfactory for that. It is most useful for penile rehabilitation (preventing damage caused by not having erections for an extended period) and limiting or reversing loss of size, so still well worth having.

There are two drugs currently used for injections, and one of them can cause pain in some people. The other drug doesn't as far as I know, but there's only one product available using that. That matters because all the injections and other products for non working nerves seem to take it in turns to go unavailable. Also, NHS is likely to limit you to 1 per week. Another option if erections are lost is a penile implant, which replaces the erectile tissue in the penis with either a permanent erection which can be bent out of the way when not required, or an inflatable implant which enables an erection to be pumped up when required. You need to be in good health to have these fitted, and not a smoker.

I don't know about the 50/100% question. Since the erection nerves are not really visible and don't always follow the same path, the idea that the surgeon accurately knows how much were saved is a bit questionable. There are cases where the surgeon says there was no nerve sparing but erectile function recovers, but probably more cases where there is full nerve sparing, but it doesn't recover.

Given sexual function is important to you, have you considered radiotherapy? That is less likely to damage erectile function, but there are no guarantees with any of the treatment options. If radiotherapy does damage erectile function, it usually starts slowly within 2 years of treatment and gets progressively worse. You are a bit young for radiotherapy, but I did it at age 57 partly for this reason (I would have been non nerve sparing). 3½ years after treatment, urinary function and erections work exactly like they did before treatment. I do have some minor rectal bleeding, but it's painless and has no impact on quality of life.

Don't hold back with any more questions - that's the main purpose of the forum.

As Andy says there are no silly questions on here…everyone is incredibly helpful and knowledgable  ….and you can ask about anything and everything.
Andy made one point that interests(and saddens me I suppose although staying alive is more important!). If erectile function after RT tends to start within 2 years (if it’s going to happen)  and gets worse, those who have 2 years of HT following RT, followed by perhaps another 1-2 years to get your libido back, may never have that ‘pleasure’ again😟

In relation to nerve-sparing - EU data suggests that erectile recovery is more or less identical for men with full nerve sparing, partial nerve sparing and unilateral nerve sparing.

As it happens, John had 50% nerve sparing 13 years ago and then salvage RT 11 years ago. He has no mechanical ED although he does struggle emotionally and often loses his erection during the act (if he hasn't used an injection)

I think it's difficult to obtain good data for erectile function after treatments.

The NPCA sends their post treatment questionnaire out 18 months after diagnosis and assumes your treatment is finished by then. For patients on RT+HT, that's unlikely. Since they don't ascertain if you are still on HT or under the effects of HT when you answer the questions about erectile function, their data on this is completely useless (it's going to show worse results than are really the case).

Like many patients on RT+HT, I was still on HT when I had to fill the questionnaire in, so my erectile function was not good at that point. However, now that I have completed treatment and fully recovered from the HT, my erectile function is exactly the same as it was before treatment. (Not everyone is so lucky.) Since my questionnaire would have given a misleading answer at the point when I had to fill it in, I didn't bother returning it.

I had a talk with NPCA at the time, and they said I might get another questionnaire a year later. I didn't, but that also would have been too soon in any case. I talked with them about this issue, and it had never occurred to them that treatment wouldn't be finished 18 months after diagnosis and the data they were collecting was meaningless. I was exceeding unimpressed with them.

On the timeframe for ED after RT, I had quite a detailed conversation about this with one of (if not the) UK expert. His view is that if you're going to get ED from the radiotherapy, it will start within 2 years of the treatment, and slowly get worse over several years afterwards. If you get to 2 years after RT without any reduction in erectile function then any later ED you get is not due to the RT. However, it's complicated by the HT, which can also cause permanent ED via different mechanisms - penile physio is the best protection against that, but not guaranteed to provide complete protection - it will help against fibrosis (shinkage, Peyronie's), but not possible smooth muscle loss caused by loss of Testosterone which can cause loss of erections via venous leak. Like Lyn, I haven't come across anyone who lost the erectile function according to this RT loss pattern, which makes me think ED due to RT is rarer than the stats claim, probably because of poor data collection like that of the NPCA. ED due to HT and not doing penile physio is probably more significant, and largely avoidable by explaining to patients on HT they must do penile physio if they want to preserve their erectile function after HT.

Edited by member 02 Apr 2023 at 22:42  | Reason: Not specified

I think your logical approach is very sensible. I don't necessarily believe in a), except where the patient is young and thus is looking for 20+ years remission, which is quite an ask for one treatment. So having a second treatment available to boost your remission is a good idea if you're younger. b) is a good point too.

My attitude definitely was to "get it out" and I haven't changed my mind in 8 years, there is something reassuring about knowing the offending parr is no longer there. This is despite serious complications at the time and having a small persistent PSA. All other functions are back to normal if slightly "flaky".

Good look with your choices..

Peter