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Penile Rehab Question/post-RP ED

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Posted 8/12/2023 7:51 PM (GMT 0)
Hello. Husband had a nerve sparing RP about 10 months ago. I'm looking for some encouraging words re: recovery of erectile function following RP. At 10 months out, he hasn't had any return of erections and he hasn't had a sufficient response to trimix. (blood flow improves, but not to the point of an erection) He just got a new prescription for a different strength trimix and will try that out to see if it has a better response than the initial strength. Any suggestions/recommendations are appreciated. He's been on daily cialis 5mg since his RP. He is feeling pretty discouraged at this point and the gravity of the changes and the fact that he is only 53 is weighing heavily on him. However, his dad died from PC and we are grateful that his cancer was caught early. Thankfully, his post-op PSA's have been <.01 and his cancer was contained to the prostate, 3+4=7, all margins were negative, negative nodes, T2c. Thanks in advance for any replies and encouragement.
Posted 8/12/2023 8:20 PM (GMT 0)
Hi Joinedtheclub, I had cryo surgery over 17 tears ago to remove about half the prostate. I was cancer free for 15 years and then it came back with a vengeance. I was then put on Androgen depravation therapy, Elegard, (a drug to remove and prevent the body from producing testosterone) and it worked somewhat, but I could not live with the side effects. I was also given 10 very high doses of Radiation. ED was complete and I stopped everything for about a year and tried everything out there to help with the Ed, but nothing worked, not even close! My PSA was rising and the cancer was metastatic and I was put on a new drug Orgovyx, and it reduced both my PSA and Testosterone without many of the side effects of the other drug, but was told that my ED was permanent due to the damage done during surgery and radiation. I am now looking forward to a surgically implanted prosthesis to enable me to have an erection at will. It is a 3 piece implant that works like a normal erection, except instead of blood filling the penis, saline solution does the job.
Stay in touch and I will let you know how this works out for me.
Posted 8/13/2023 1:26 AM (GMT 0)
Hello,
You didn't share where you live--but there are specialists in this sort of thing in some places, maybe it's time to look for them.

By 10 months, there should have been some improvement. You didn't say--you did mention good cancer control, how is he doing on continence? It's not unusual for ED and (in)continence to kind of go together.

Another option to consider is an implant--I know it's another surgery, but there are a quite a few post-PC men who have had good results with the implant.
Posted 8/13/2023 6:16 AM (GMT 0)

halbert said...
Hello,
You didn't share where you live--but there are specialists in this sort of thing in some places, maybe it's time to look for them.

By 10 months, there should have been some improvement. You didn't say--you did mention good cancer control, how is he doing on continence? It's not unusual for ED and (in)continence to kind of go together.

Another option to consider is an implant--I know it's another surgery, but there are a quite a few post-PC men who have had good results with the implant.

He's doing well with urinary continence... he was fully continent/pad-free about 3 weeks after the catheter was pulled. Unfortunately, our insurance doesn't cover any ED care. It's pretty obnoxious that if a different type of surgery for cancer treatment caused nerve damage and a functional loss/healing time, our insurance plan would cover for the rehabilitation/treatment of the functional loss. However, ED treatment doesn't fall under the plan. We're in Illinois.

His urologist/surgeon said a pump wouldn't be considered until 2 years post-op ... but I can't imagine being able to pay out of pocket for that surgery/hospitalization/etc.. If there are any complications/additional hospitalization, etc.. nothing would be covered.
Posted 8/13/2023 10:08 AM (GMT 0)
I'm curious, where in Illinois? When I had my diagnosis/treatment, I lived in downstate Illinois. I had my treatment in St. Louis rather than at the small local hospital. Two years seems to be a long time to wait for the pump--atrophy of the tissues sets in long before that.

You're in a bind, and it's difficult. If you can, a visit to another urologist at a larger, research based medical center might be of benefit. A second opinion can't hurt, and won't cost a lot (and a lot of these higher end docs have ways to maneuver around difficult insurance issues).
Posted 8/13/2023 3:27 PM (GMT 0)
He had his surgery at the University of Chicago. His surgeon has done thousands of RALPs and is very experienced, but it seems that overall, they are lacking on the penile rehab portion of everything. They wanted him to take cialis in the few months prior to his RP and he's been on it ever since. He had to push to get a rx. for the injections. He's been using a pump so hopefully he's been able to combat some of the atrophy changes that occur.
Posted 8/13/2023 3:48 PM (GMT 0)

Oldarmyvet24 said...
Hi Joinedtheclub, I had cryo surgery over 17 tears ago to remove about half the prostate. I was cancer free for 15 years and then it came back with a vengeance. I was then put on Androgen depravation therapy, Elegard, (a drug to remove and prevent the body from producing testosterone) and it worked somewhat, but I could not live with the side effects. I was also given 10 very high doses of Radiation. ED was complete and I stopped everything for about a year and tried everything out there to help with the Ed, but nothing worked, not even close! My PSA was rising and the cancer was metastatic and I was put on a new drug Orgovyx, and it reduced both my PSA and Testosterone without many of the side effects of the other drug, but was told that my ED was permanent due to the damage done during surgery and radiation. I am now looking forward to a surgically implanted prosthesis to enable me to have an erection at will. It is a 3 piece implant that works like a normal erection, except instead of blood filling the penis, saline solution does the job.
Stay in touch and I will let you know how this works out for me.


Hi Oldarmyvet, thanks for your response. Sending good thoughts for your upcoming surgery and for a successful outcome! Sounds like you've been through a lot already, I hope things are stable and in control!
Posted 8/13/2023 4:30 PM (GMT 0)

Joinedtheclub said...

halbert said...
….It's pretty obnoxious that if a different type of surgery for cancer treatment caused nerve damage and a functional loss/healing time, our insurance plan would cover for the rehabilitation/treatment of the functional loss. However, ED treatment doesn't fall under the plan….

Not to go off topic but that is a peeve on mine. My wife went through breast cancer and had a double mastectomy. Insurance would cover complete reconstruction, which she declined anyway. But our insurance won’t cover ED rehab which costs quite a bit less.
Posted 8/13/2023 6:02 PM (GMT 0)

VinceInMT said...

Joinedtheclub said...

halbert said...
….It's pretty obnoxious that if a different type of surgery for cancer treatment caused nerve damage and a functional loss/healing time, our insurance plan would cover for the rehabilitation/treatment of the functional loss. However, ED treatment doesn't fall under the plan….

Not to go off topic but that is a peeve on mine. My wife went through breast cancer and had a double mastectomy. Insurance would cover complete reconstruction, which she declined anyway. But our insurance won’t cover ED rehab which costs quite a bit less.

And don't get me started on medicare D and ED medications........
Posted 8/13/2023 7:56 PM (GMT 0)
FYI - 5mg of Cialis (tadalafil) is a maintenance dosage, 20mg is the event dose in case he wants to try that and see what happens in a hour or two. ED recovery is typically measured over 2 years if that helps any.

I have not had any luck but am 71 and wife has had her own cancer issues so we worry about other stuff now. Age 53 would be a different story.
Posted 8/19/2023 7:46 PM (GMT 0)
I have used Cialis 20 mg on a daily basis for about a month and it was of no help, but did lower my blood pressure somewhat. My doctor and I agreed to stop using the drug, but it did give us a good indication that the nerves/tissue and mechanisms that control erections were damaged or destroyed from both the surgery and the ADT meds i have been taking. It's just never going to happen again unless i have implant surgery which I am definitely going to have done. I will keep you all informed.
Posted 8/21/2023 4:03 PM (GMT 0)
Joined:
It sounds like your husband has a venous leak. The veins that drain the penis are designed to be squashed flat when a man gets a full erection. This restricts the blood flow out of the erectile chambers and helps the erection process proceed. Men with a venous leak have hard-to-squash veins and have trouble achieving a really hard erection. When these men use trimix the extra blood flow tends to wash away the drugs. Sometimes men with a venous leak can succeed with trimix but they need a lot higher dose than men with normal veins. I finally got an implant but during the several years I tried to get past my venous leak with trimix my typical dose was enough to send ten normal guys to the ER with "an erection lasting more than four hours."
The bottom line is that he should keep on with his dose titration and not be to discouraged if he needs a lot more than some other guys.
Posted 8/23/2023 2:43 AM (GMT 0)
Hi Peter, thanks for your thoughts. He tried the new strength trimix and it was a little bit better but not a full response. Will titrate up the dose and go from there. Is venous leak something that happens after RP? I thought it was the trauma to the nerves during RP that causes ED ... does RP cause venous leak in men that didn't have it prior to RP?
Posted 8/26/2023 4:01 AM (GMT 0)
Joined:
Venous leak is a problem that lots of guys have when they reach the age where men start to have problems with their prostates. If everything else is perfect with his hydraulics then the leak will be a big part of the reason why he's not quite like he was when he was 18. When other things go wrong the leak can exacerbate the problems.
RP doesn't cause the leak, at least not directly, but the leak can make recovery of erectile function more difficult.
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