If the RP is expected to be non nerve-sparing then ED is an almost certain outcome which may or may not be helped by use of a vacuum pump (if your local NHS trust funds these) or injections (when there isn't a national shortage or injections). Tablets and creams won't work if he has no nerves. If some nerves are spared, he may recover erectile function over time and tablets might help.
If he has RT, the ED may happen but not until some years later - it tends to be okay at first and then decline over perhaps the next 5 years. This isn't a certainty though - my husband had RT nearly 10 years ago and it has not caused ED. The issue will be not so much the ED but loss of libido - it sounds like your husband has a significant amount of cancer and so will have hormone therapy as well as radiotherapy. The HT kills testosterone production which switches off libido - he may technically be able to get an erection but is unlikely to want to do anything with it. This can recover once the HT finishes (usually 18 months to 3 years) but it will be important that he uses a pump etc to keep the penis healthy in the meantime otherwise, when the HT ends, his penis will have atrophied (shrunk) and this can cause further ED.
One of the advantages of changing your choice to RT would be that he could start HT immediately which will prevent any further spread. If you stick with the RP, you could still ask about HT to control the cancer while you are waiting.
Whether you can ask for a PSMA scan depends somewhat on where you are in the country and what detail of scan he has already had. Gallium 68 is not the only PSMA tracer available but, in common with other PSMA tracers, it is more useful for identifying cancer clusters when a cancer has recurred than it is at diagnostic stage. It will also potentially delay treatment even longer as he cannot start HT before the scan is done.
What kind of MRI scan has he already had and how far are you from London?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I has a similar diagnosis but T2BN0M0 gleason 3+4 multifocal and also with perineal invasion but contained. I opted for surgery with RARP in June 2021 by a high volume “ninja” surgeon at LBH. Post op histology confirmed 30% of the gland was cancerous but grade remained as above. I had good outcomes on both ED and UI. Your staging is slightly different I know but I reckon you should get at least one if not two second opinions from different surgeons. Check out my main thread and TechGuy for clues to the where to find the ninja surgeons! Best of luck to you
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I was T3a, and if I'd gone the RP route, it was unlikely I'd have nerve sparing. This was one of the reasons I went the RT/HT route. There's still a chance of losing erections with RT/HT, but it's lower than with RP. He will almost certainly lose erectile function temporarily while on HT, but as he will lose libido too, it's more of an issue for the partner than for him. I'm now almost out of the other end 3+ years after diagnosis, and I think everything's back working, but I'll have a better idea in a few months time.
As Lyn said, it's really important to undertake penile rehabilitation while on HT (or penile physio as the expert in this field refers to it). Otherwise, if he goes for a year or more on HT without erections, that will significantly damage the erectile tissues of the penis, so he will need to be using a pump (vacuum erection device) regularly, and if he can get regular Tadalafil, better still.
Edited by member 06 Jan 2022 at 21:50
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Hi Shady P. Lyn is the expert here. But just wanted to say that what you're going through now was (for me) the worst part. The decision making is a really hard (possibly the worst) of the whole process. Once you have decided on treatment things get easier. You certainly seem to have done your homework. I also spent weeks researching, reading scholarly articles etc. Unfortunately what you have to accept is uncertainty and that I think is the hardest part. Not every man will have ED, incontinence, complications etc but invariably some will. My OH had RARP in mid Dec. We still don't know the long term effects and that's still causes a certain amount of anxiety. I guess you just have to take every day as it comes. You could always get a second opinion on the nerve sparing element from another surgeon?? My OH chose surgery as he wanted the cancer out of him, RT is an option after surgery if reoccurrence occurs and it was the recommended route for a man of his age (56). He didn't want RT because of the length of treatment, he also didn't like the thought of hormones and poisoning his body with the radiation. We have a young child and we didn't want his dad feeling ill for a prolonged period. He just wanted it over with quickly and then to recover. It's very much a personal choice though and depends on personal circumstance. At the end of the day you just want a healthy cancer free hubby. Sometimes it's easy to lose focus and concentrate on the side effects, rather than the job in hand- getting rid of the cancer. It's really really hard. And you have my upmost sympathy because it is not an easy decision to make.
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shadyP: there is a bit of contradiction in your OP. Capsule-confined cancer should normally imply nerve-sparing, but is not T3a, so I am a bit confused. If it all shakes down to no nerve sparing, then radiation is the best shot for ED, for sure. But I share your concerns and his. Anyway you can post any more information to resolve the possible contradictions? Ideally the radiologist's report, if you can get hold of it? (But I know getting that sort of thing out of the NHS requires all sorts of qualities...) What hospital are you at?
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My OH was diagnosed T3a, he was put on HT initially because of some spread but he recently had RALP with 50% nerves spared. The histology downgraded him to T2, not sure if it shrunk because of HT or not to be honest. Don’t know the ED implications at the moment as it’s still early days.
Best of luck with whatever you decide, it really isn’t an easy time as most of us know. Things do get better when you have a plan in place though.