Hi Francine,
I just noticed this is your second post and no one said welcome and thanked you for your first post. So welcome, and I'll look up that book you mentioned in the previous post.
Glad to hear about the slight erection. I must admit I can't help you with much advise in that department at the moment, being on hormone therapy I'm not functioning too well down there, but things will hopefully improve soon, but that's why your post about "return to intimacy" may be a good read.
I think for an ED clinic appointment you may have to be proactive.Viagra was first mentioned to me at my first post treatment appointment, and consultant wrote to GP asking him to prescribe, which he did. Listening to people on here talking about pumps and injections etc. I think if you ask you can get these things, but if you don't ask, nothing will happen. Being on HT my libido is so low I can't be bothered asking.
Good luck for you and hubby, keep posting here and keep reading here, it is a mine of useful information.
Edited by member 28 Feb 2020 at 21:23
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User
Was it when he was opening his bowels?
Best thing is probably to wait for the post-op appointment to discuss with the surgeon in more detail and clarify the extent of the nerve sparing. If it turns out that some nerves were left behind after all, it will be worth asking for Cialis daily dose (if your CCG allows that). If the op was definitely non nerve sparing, the enlargement that he experienced is more likely to be down to pressure from the bowel and Cialis probably won't be very effective. However, there are lots of other things that he can do to give himself the best chance of recovering erectile function, including learning how to masturbate without an erection and getting hold of a pump; only after the post-op review though and you will need to find out whether pumps are funded by your CCG (damn the ED postcode lottery).
The surgeon will be able to tell you a) whether there is an ED service in your area and b) if so, whether it is he or the GP that should refer you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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The nerves are a mesh (you can see them on some YouTube videos of prostatectomies) and it may be that some were sufficiently separated from the prostate that they weren't removed with it.
Since you think you might have had a slight erection, the thing to do is to amplify the signal, and see if that generates more of an erection. Do this by taking a PDE5 inhibitor, such as an event dose Viagra or Tadalafil. (You can buy Viagra Connect without a prescription, or you could go to your GP and explain and ask for some.) If you have no success with the first PDE5 inhibitor drug, try a different one. They don't all work for everyone - different people need different ones, which you find by trial and error. There are 4 of them. Tadalafil (Cialis) tends to work in more cases than Sildenafil (Viagra), and tadalafil can be used for penile rehabilitation too, so that's the ideal one to start with.
If you confirm some response this way (or by getting more erections without using PDE5 inhibitors), you should switch to follow a nerve sparing penile rehabilitation path.
User
DW
I was supposedly non nerve sparing, but got some stirrings in my penis. My ED doctor prescribed daily sildenafil.
Thanks Chris
User
I'm glad you are thinking of reading the book, it's very good!
User
No, it didn't happen during a bowel movement. My husband is going to speak to one of the Specialist Nurses tomorrow, we live in Scotland, so I think he will get an appointment for the ED clinic around the 6 weeks.
User
How unexpectedly wonderful, then 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
My husband had just had this first PSA test done at 4 weeks post surgery. Disappointingly, the result was 2.0. The staff at the Health Centre think that it was done to early. My husband tried to get in touch with his surgeon, but had no success on Friday, and is hoping to get hold on him tomorrow. Any thoughts on this very much appreciated!
User
Sorry to see this. The fact that he had non nerve sparing suggests that they were already aware that surgery might not get all of the cancer? They may suggest another PSA test in a couple of weeks (6-8 weeks post op is normal) but it is unlikely to drop from 2.0 to below 0.1 in two weeks so I imagine he will be referred to oncology for scans and adjuvant treatment.
It is definitely 2.0 and not 0.2?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn,
Thanks for your reply. My husband has spoken to a specialist nurse on Monday, explaining all this to her, and she asked a lot of questions about his cancer before the operation: his gleason score, PSA score, etc., and said that they can only cut out so much during the op ,and therefore there may be some cancer cells left, and she also thought that he would probably need salvage radiotherapy. He's getting another PSA test done in four weeks.
I presume from reading your posts in other forums, that you are a specialist nurse yourself. Could you tell us what to expect with salvage radiation therapy; will the side effects depend on the dosage of the radiation and the size of the area that they will treat? Could his ED symptoms become even worse than they are now, or is that very difficult to establish before treatment? What are the common side effects?
Thanks for your reply
User
Hi, I am not a specialist nurse - sorry - just been dealing with the reality of it and hanging around here for a lot of years.
Side effects of adjuvant / salvage RT vary significantly from man to man. My husband had no side effects at all apart from needing an afternoon nap a couple of days towards the end. Side effects also depend on whether or not he will have hormone treatment with the RT, which he almost certainly will. The size of the area they will treat will depend a lot on where the left behind cancer cells are so I hope he will be offered a detailed scan (or scans) before they make a decision. With a PSA of 2 you should prepare for the possibility that this isn't just a few stray cells left behind in the prostate bed, in which case he may be offered HT and / or chemo instead of RT.
- RT can make ED worse but usually, months or years later rather than immediately.
- HT often reduces the libido to zero so even if he hasn't got ED it may be hard for him to get aroused
- Chemo has a significant impact on ability to have sex, especially in days 5-12 of each cycle
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks for your reply!
Are men still able to use their pumps during radiation therapy? Or will the extreme fatigue hinder them to do so anyways?
User
It won't be the fatigue, it will be the loss of libido (depending on which hormone he has). I have given you a fuller response on the other thread.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Lyn,
I just meant using the pump for rehabilitation purposes.
User
You should continue using pump and PDE5 inhibitors during hormone therapy if you can't get erections naturally (radiotherapy doesn't make any difference, it's the loss of libido due to hormone therapy which is the issue). Penile rehabilitation is required both post-prostatectomy and for most people while on hormone therapy too.
User
Andy's reply is technically correct but if your OH loses his libido, he may find it difficult to motivate to use the pump because that part of his brain that would think it important is switched off. Maintaining penile health during hormone treatment is quite difficult; there are still may NHS trusts who do not sanction the prescribing of Viagra / Cialis type drugs during HT as they see it as having no benefit to a man who isn't having sex; the same goes for pumps. If your OH is already under the care of an ED nurse, you can ask what the situation is in your area and you can encourage him to use the pump but if he isn't motivated, it will seem to him to be nagging.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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