Erections post radical prostatectomy

Posted by havhav @havhav, Oct 2 12:04pm

My 55 year old husband has been diagnosed with PCA, Gleason 7 (4+3) with MRI revealing a grade 4 tumour in one side of prostate with an area of capsule where integrity is questionable. MRI also showed lymphadenopathy which we are assuming may be mets with off chance they are reactive lymph nodes instead as he had elastic ligation of hemorrhoids 10 days then again 3 days before the MRI (not ideal timing but MRI appointment was last minute). Bone scan and CT ok. Currently waiting for further consults on options but scheduled for RP early November as surgeon feels best option for his age and test results. From my attempts at researching RP side effects, erectile dysfunction very common, mild to complete. Surgeon told us expect 80% of previous erectile firmness at one year post RP. This seems very optimistic compared to information I have read however a lot of the study information on good old Google scholar comes from older surgeries prior to the anatomical research that improved nerve sparing surgical techniques. What we would like is more facts. We would like to go into the surgery (if that is final decision for next step which at his age sounds likely) knowing realistic expectations for post surgery complications including marked decrease or absence of erectile function. The 80% of original erectile firmness but otherwise no concerns seems overly positive to me. If true, is great. If not, that info leads my husband towards unrealistic expectations. We would like to be prepared based on scientific facts rather than wondering if surgeon just trying to soften the blow when delivering information on his cancer and treatment plan. Thank you for any additional information you may have or can direct us towards.

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Hi @havhav
I'm no expert but can give you some insight ..

Diagnosed at 60 Gleason 4+3 but I think I was a little less advanced, there was no obvious tumor on the outside of the prostate, just inside with slight invasions but clean margins.

At about 3-6 mos I could get about 70%-80% maybe a little less, not enough for fun play with my wife and it would come with a dry orgasm. Using a little pharmaceuticals was helpful. There are a couple other options if needed but I'll let the docs get into that.

I think the doctors are kind of stuck giving you the answers like they do in percentages. Every question I asked was answered with XX% of men your age recovered blah blah after this amount of time. Virtually like he was reading off a chart. Unfortunately this is as close to "scientific facts" as I believe they can get.

It's my belief..
A. They don't really know exactly what they are up against till they get in there.
B. Everyone's a little different in presentation and healing capacity.

I really think that's the best they can do, nerves are funny things and take a LONG time to heal/grow
One of the things I found after diagnosis is that no one I knew talked about it much, after diagnosis I found several of the same acquaintances had dealt with this. Many get treated get better and move on with their lives, you tend not to hear from them. Meaning, I think you might hear more about bad outcomes than good ones.
Best of luck to you and your husband!

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@web265

Hi @havhav
I'm no expert but can give you some insight ..

Diagnosed at 60 Gleason 4+3 but I think I was a little less advanced, there was no obvious tumor on the outside of the prostate, just inside with slight invasions but clean margins.

At about 3-6 mos I could get about 70%-80% maybe a little less, not enough for fun play with my wife and it would come with a dry orgasm. Using a little pharmaceuticals was helpful. There are a couple other options if needed but I'll let the docs get into that.

I think the doctors are kind of stuck giving you the answers like they do in percentages. Every question I asked was answered with XX% of men your age recovered blah blah after this amount of time. Virtually like he was reading off a chart. Unfortunately this is as close to "scientific facts" as I believe they can get.

It's my belief..
A. They don't really know exactly what they are up against till they get in there.
B. Everyone's a little different in presentation and healing capacity.

I really think that's the best they can do, nerves are funny things and take a LONG time to heal/grow
One of the things I found after diagnosis is that no one I knew talked about it much, after diagnosis I found several of the same acquaintances had dealt with this. Many get treated get better and move on with their lives, you tend not to hear from them. Meaning, I think you might hear more about bad outcomes than good ones.
Best of luck to you and your husband!

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Did you get radiation after RP? Thanks.

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@web265

Hi @havhav
I'm no expert but can give you some insight ..

Diagnosed at 60 Gleason 4+3 but I think I was a little less advanced, there was no obvious tumor on the outside of the prostate, just inside with slight invasions but clean margins.

At about 3-6 mos I could get about 70%-80% maybe a little less, not enough for fun play with my wife and it would come with a dry orgasm. Using a little pharmaceuticals was helpful. There are a couple other options if needed but I'll let the docs get into that.

I think the doctors are kind of stuck giving you the answers like they do in percentages. Every question I asked was answered with XX% of men your age recovered blah blah after this amount of time. Virtually like he was reading off a chart. Unfortunately this is as close to "scientific facts" as I believe they can get.

It's my belief..
A. They don't really know exactly what they are up against till they get in there.
B. Everyone's a little different in presentation and healing capacity.

I really think that's the best they can do, nerves are funny things and take a LONG time to heal/grow
One of the things I found after diagnosis is that no one I knew talked about it much, after diagnosis I found several of the same acquaintances had dealt with this. Many get treated get better and move on with their lives, you tend not to hear from them. Meaning, I think you might hear more about bad outcomes than good ones.
Best of luck to you and your husband!

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Thank you for sharing your experience and thoughts. Definitely is helpful as the vague generalities leave us feeling rather lost and it is true that we may hear of bad outcomes more than good ones. Thanks again

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@perrychristopher

Did you get radiation after RP? Thanks.

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Yes, relatively shortly too. RP was 9/2021 and SRT started 6/2022.

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Hello. I’d be concerned too. I had a similar situation; Gleason 4+3, a tumor, cancer detected in one lymph node and RP surgery. My doctor had to cut “wide” on one side. It’s been nine months since my surgery. I’m feeling good and 98% continent; however, I have absolutely no erectile function. I wish I could be more encouraging, but that’s my situation.

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I appreciate everybody's comments. It helps to talk about it.

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I did not consider RP, choosing Proton Beam Therapy. My good friend chose the best urological surgeon available in his large Metro area (knew how to find out) and had DaVinci robotic surgery. Besides an accidental nick of a blood vessel with a huge hematoma resulting, he has had zero erectile function recovery (surgery at 69 y.o) and he's tried a lot of approaches.
I would say that post PBT I have the same limited erectile function from before treatment. (would have been nice if it improved things….

I question "surgeon feels best option for his age and test results." Ask for the evidence. I'd be asking the surgeon about how many patients he has followed who opted for traditional radiation or proton beam therapy or brachiotherapy. I can't say whether the possible extra capsular situation is best treated with surgery or otherwise. A number of people have written that various doctors when presented with the same patient have all declared that their specialty is "the best approach".
In the optimal world you'd be able to have a consult with a person or team who could explain all the options for treatment and after your decision pass you on to a team member providing that treatment.

I also think that its best to think whatever treatment chosen may "knock down the cancer" but doesn't guarantee that its gone for the rest of your husband's life. QOL – Quality of Life is a big consideration – and age affects perspective

and many couples have an active sex life for which sexual intercourse is only part of the picture. That may be worth thinking about and talking about…

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@web265

Hi @havhav
I'm no expert but can give you some insight ..

Diagnosed at 60 Gleason 4+3 but I think I was a little less advanced, there was no obvious tumor on the outside of the prostate, just inside with slight invasions but clean margins.

At about 3-6 mos I could get about 70%-80% maybe a little less, not enough for fun play with my wife and it would come with a dry orgasm. Using a little pharmaceuticals was helpful. There are a couple other options if needed but I'll let the docs get into that.

I think the doctors are kind of stuck giving you the answers like they do in percentages. Every question I asked was answered with XX% of men your age recovered blah blah after this amount of time. Virtually like he was reading off a chart. Unfortunately this is as close to "scientific facts" as I believe they can get.

It's my belief..
A. They don't really know exactly what they are up against till they get in there.
B. Everyone's a little different in presentation and healing capacity.

I really think that's the best they can do, nerves are funny things and take a LONG time to heal/grow
One of the things I found after diagnosis is that no one I knew talked about it much, after diagnosis I found several of the same acquaintances had dealt with this. Many get treated get better and move on with their lives, you tend not to hear from them. Meaning, I think you might hear more about bad outcomes than good ones.
Best of luck to you and your husband!

Jump to this post

There are probably some downsides to promising "yes, I can fix this." If it doesn't work, the problem (that they WANTED to fix, but didn't have enough control over TO fix) may now be seen as their fault. And then they may get sued.
It's important to only promise what you can deliver, which is the attempt, and not 100% success.

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On PCRI dot org's YouTube channel, look for a presentation in the recent virtual conference "Improving Quality of Life: ED, Incontinence and More", Jeffrey Brady, MD, FACS. There are penile pre-habilitation and rehabilitation therapies, implants to provide an erection, etc.

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@mrscott

On PCRI dot org's YouTube channel, look for a presentation in the recent virtual conference "Improving Quality of Life: ED, Incontinence and More", Jeffrey Brady, MD, FACS. There are penile pre-habilitation and rehabilitation therapies, implants to provide an erection, etc.

Jump to this post

@mrscott, I noticed that you wished to post a link to a video with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post the video for you.

Day 1 | PSMA PET, Active Surveillance, ED & Incontinence | 2022 Prostate Cancer Patient Conference | Prostate Cancer Research Institute

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