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Facing a diagnosis of PC and dealing with a therapy

cpl901 profile image
40 Replies

I m 56 and was diagnosed with PC.

I m anxious about my sexual life after the surgery. At the moment everything is working fine even if i m not an expert, but i like sex and having dates or encounter. No partner, that will make my sexual reconstruction difficult after surgery

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cpl901 profile image
cpl901
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Tall_Allen profile image
Tall_Allen

I'm glad I was able to talk with you before you made a decision. Please read this and follow the links:

prostatecancer.news/2021/12...

I was in the same boat when I was diagnosed at age 57.

cpl901 profile image
cpl901 in reply to Tall_Allen

my english is not so good i m from Europe. I understand why not do a prostatectomy but the radiation are not better. You still loose your semen ejaculation and may be your erection.

Tall_Allen profile image
Tall_Allen in reply to cpl901

Radiation is a LOT better in terms of sexual side effects. About 65% suffer from ED after prostatectomy, while about 35% suffer from ED after radiation.

For prostatectomy, you will lose all ejaculate. For radiation, 15% lose ejaculate but most have reduced semen volume.

Other side effects of prostatectomy that never occur with radiation include penis size loss and urinating at orgasm.

cpl901 profile image
cpl901 in reply to Tall_Allen

my problem is that i have a normal small prostate. After RT it will shrink and after there is no way to take it away if there is still cancer in it. I ask for HIFU, same problem, i will go from a prostate 27 ml to 20 ml ? and then ? semen is will be less too, and nerves could be dammaged as well by the rays.

Does it depend on where the tumor is in the prostate ? i guess mine is on the right side 5 cores Gleason 7 and one core Gleason 6 right.

I m mostly concerned about sexual reeducation, erection, orgasm and last but not least my social life, e feel alone

Tall_Allen profile image
Tall_Allen in reply to cpl901

Ejaculate volume will reduce after radiation, but it will vanish completely after surgery. Prostate size has no effect. Nerves are not damaged by radiation.

There are many salvage therapies if radiation should fail:

prostatecancer.news/2017/09...

But the success rates for favorable intermediate risk prostate cancer is over 90% with SBRT, so salvage seldom is used.

prostatecancer.news/2018/10...

cpl901 profile image
cpl901 in reply to Tall_Allen

I dont know SBRT ? is that Radio Therapy ? SB?

RT can dammage the rectum too ?

My Dr. says if i want to do RT i have to undergo hormone therapy together to have success.

Do you know the story of Larry Clapp ? is that true ?

They are people that heal "spontaneously" ? I allways eat healthy and practice some sport, i dont believe really in it. It s just the prostate quality (mine) that is not good and get tumor cells.

Tall_Allen profile image
Tall_Allen in reply to cpl901

I had SBRT - it's a very precise form of external beam radiation. What country are you in? Can you travel within the EU for therapy?

Do you know if your Gleason score is 3+4 or 4+3? If it is 3+4 you do not need hormone therapy.

If you base your therapy on miraculous anecdotes you read on the internet, prostate cancer can become a fatal disease. Right now it is still very curable.

It is understandable that you are panicking, Take a few months to learn more before making any decision.

cpl901 profile image
cpl901 in reply to Tall_Allen

One core came out with Gleason 4+3, four with 3+4 and two 3+3 (one of them right, the rest left side)

cpl901 profile image
cpl901 in reply to Tall_Allen

i have one core 4+3 Four 3+4 and two 3+3

Tall_Allen profile image
Tall_Allen in reply to cpl901

Lots of good cures for that. Consider this clinical trial:

clinicaltrials.gov/ct2/show...

Steve507 profile image
Steve507 in reply to cpl901

HEY CPL, I've had a Rad Prostatectomy 2019 and 7 weeks of Radiotherapyin 2021 and I have very slight ED at 65 come December. God supplied me with a extra nerve bundles 😆 and my surgeon was an nerve sparing robotic specialist.

I enjoy sex today without any regrets and enjoyable lament.

PSA 0.01

cpl901 profile image
cpl901 in reply to Tall_Allen

Unfortunatly as i suspected the position near the apex and on the left side neyr vascular and nerve bundle is not good for radiation as it has to take a margine (bigger than the tumor itself wich is less than 1 cm). No focal treatment possible or at least not possible to do a good treatment. Focal can be done but not good. That s the answer i got form most doctors and hospital even private ones (that would tell you what you want to hear because they just look at there benefits). I have to prepare my mind for surgery, and after surgery...

Tall_Allen profile image
Tall_Allen in reply to cpl901

I agree that focal is a poor solution - and I would never suggest it.

I do not understand why radiation is precluded. In fact, they can even contour around the neurovascular bundle, as in this article:

prostatecancer.news/2017/03...

Prostatectomy, on the other hand, is certain to leave you impotent if they have to remove the neurovascular bundles.

cpl901 profile image
cpl901 in reply to Tall_Allen

surgery could leave neurovascular bundles by side that s what one surgeon did explain to me. On the left side where the tumor is the risk is to cut in the nerve bundle but the right side is clear. But as one surgeon told me he can save them both ?! The tumor is in the apex so the problem is also to save the sphincter muscles. I m 57 yo fit and healthy and i m struggling with the idea of let me destroy for saving me from something that i even feel . May be 1 cm tumor gleason 3+4 ?

Tall_Allen profile image
Tall_Allen in reply to cpl901

The percent of patients who are previously potent who remain potent after nerve-sparing prostatectomy is 35%. The percent of patients who are previously potent who remain potent without nerve-sparing prostatectomy is 13%. You can expect nerve-sparing on one side to be somewhere in between. Nerve-sparing does not mean potency-preserving. 20% are left permanently incontinent.

Radiation has little effect on nerves. When radiation causes impotence, it is because of stenosis in the blood vessels. That is why I took daily sildenafil or tadalafil to prevent stenosis.

cpl901 profile image
cpl901 in reply to Tall_Allen

i read the article and it s clear that surgery is in the bottom. But it s the only way that is not toxic. With a Gleason 4+3 ADT is added to RT

Tall_Allen profile image
Tall_Allen in reply to cpl901

4-6 months of ADT may help the radiation work better, or you can boost the radiation dose within the prostate with brachytherapy.

Darryl profile image
DarrylPartner

so you know you are not alone. Gay Pride and Prostate Cancer

youtube.com/playlist?list=P...

cpl901 profile image
cpl901 in reply to Darryl

i understand why gay men never sould do prostatectomy. Some do it some prefere radiation, but the side effects are equal. It s the loss or the change of identity that brings the anxiety.

Tall_Allen profile image
Tall_Allen in reply to cpl901

Side effects are not equal. You have been misinformed.

prostatecancerinfolink.net/...

prostatecancer.news/2016/08...

Leeaussie5 profile image
Leeaussie5

I know your fear. Make your decision carefully. When I had my diagnosis I had several opinions. I chose surgery. I carefully chose my surgeon. The best had an incontinence rate of 1% of patients who need to wear a pad. The next best I found had 10%. That alone was enough to make my decision. I had a - sex rehab doctor, a counsellor and a incontinence physio. You need lots of support to get through this. My end result has been good - as good as I could hope for. I still have a good sex life with plenty of hookups. All the best to you.

cpl901 profile image
cpl901 in reply to Leeaussie5

Are you single or in couple. I m single so i have to face it alone, and no help for reconstruction after.

Leeaussie5 profile image
Leeaussie5 in reply to cpl901

facing any thing alone is more scary. But there is lots of support you can find. My sex rehab doctor prescribed tadafil before surgery. The first week after surgery was with a catheter. I was getting erections even then, Life will be different after your surgery or radiation. But it will still be good. I meet lots of men our age without cancer who cannot get a hard on. But we play with so much fun. It is as much an attitude thing as a physical thing.

cpl901 profile image
cpl901 in reply to Leeaussie5

What kind of guy where you before surgery ? Or did surgery affect your sexlife after, exept of reeduccation ? what about loss of sperma ?

I m sorry my english is not so good i m from Europe

cpl901 profile image
cpl901 in reply to Leeaussie5

Was that a good idea to take tadalafil before surgery ? i guess the surgeon did very well to spare the nerves and take off the tumor. I met lf course men who cannot get a hard on easily about my age, but they are older than me that do well. Where you allways enjoying you sex life playfully ? Where you partnered ? Or just playing around ? I think this cancer can change your identity, and thats whats scares me most.

Leeaussie5 profile image
Leeaussie5 in reply to cpl901

my surgeon was sceptical that tak8ng tadafil before surgery would have any effect on the end result. But I did it anyway. My erections were always ok. But with tadafil it was back to being 18:again. I do miss producing sperm.

jimreilly profile image
jimreilly

Of course you are afraid, normal under the circumstances. Don't let the fear throw you, or force you into making a decision too quickly just to end the fear. And whatever happens, the advice here is good--find the best doctor, do the best preparation for continuing your sexual life after surgery should you have it (Leeaussie5 really got it right!). And....good luck! lots of company here to root for you!

cpl901 profile image
cpl901 in reply to jimreilly

I m not that affraid about the tumor, but more about the cure and having away (hopefully) for the rest of my life.

jimreilly profile image
jimreilly in reply to cpl901

I understand. Tall Allen is one of the best on this site and his information and valuable and, I think, to be trusted. If I had it to do over I would consider radiation more thoroughly, instead of surgery, which is what I chose. But I'm not complaining--so far I'm cancer free, leading a decent life, even if my sex life is more limited than it was before.

dadzone43 profile image
dadzone43

I can only underscore what the guys above have said. I chose surgery. As far as I can tell the surgery was successful. I think the surgeon did his best at "nerve sparing" but I also think this is somewhat a fantasy. I am left with partial erections not responding fully to penile rehab. Two men in my support group have had prostheses installed--one straight, one gay. Both are happy they did that. I am 79 and having surgery to get a hard cock does not appeal. The rest of me works and I am a vigorous sexual partner. I miss my semen; I miss my erection. I enjoy being alive.

cpl901 profile image
cpl901 in reply to dadzone43

When did you have your surgery ? You are more than 20 years older than me. I think somethings gonna happen in my life, happy or sad, but this is not a good news when you are nearly "forced" to say good bye to your sex life before age 60.

Baldylocks profile image
Baldylocks in reply to dadzone43

The best response ever, it’s what most of us need to hear in order to move on. Thank you.

dadzone43 profile image
dadzone43

Surgery was Dec., 2018. I had to do a lot of thinking because of the wonderful sex I had rediscovered with my new partner. The height of irony: I was finally and fully out as a gay man, I was in a hot relationship and discovering a broader sexual expression and lost my capacity. I had to consider how much of my identity was arose from my penis. I wanted to think and believe that I was more than my dick. That internal conversation has gone back and forth a lot in the past four years. I got good erections from TriMix injections but they caused such pain in the perineum/ taint that I could not have had sex if I wanted to. BiMix was better, but injections were a hassle and I was not doing "penetrative sex" anyway. That has not changed. Masturbation gives some satisfaction. But I would like at times to have a good boner. Hope this is not TMI for you...

NYC_talker profile image
NYC_talker

Please carefully read the articles and comments of Tall_Allen. This is a big decision and you will have less complications and shorter recovery regarding sexual functions with radiation over surgery. This is particularly true as a gay man, with regard to the needs and desires you have. And studies show equal outcomes with surgery and radiation, so surgery isn't better than radiation at eradicating cancer.

Do not be swayed by doctors telling you that if radiation fails there are no other options. Simply is not true. There are options whether surgery fails or radiation fails. And if surgery fails you will do radiation anyway. Please think about this. And you are welcome to read my profile and comments.

cpl901 profile image
cpl901 in reply to NYC_talker

I understand. I should tell you that my life was not allways as gay. I was married in between and have a son 20 yo. I m now living alone without fix partner. Untill now i m happy with masturbation alone or in company, i m not an expert in active or passiv, even if i practice wilder sometimes. Where i live the dont do seed implants. A friend (hetero) of mine did it when he was 48 and now with 60 he is under strong anti hormone therapy. Radiotherapy is equal to surgery but they propose me to add anti hormone therapy with radiation. So my choice is radiotherapy+antihormone, or surgery. I m affraid that with radio and especially antihormone i will loose the little drive i have left for sex.

cpl901 profile image
cpl901 in reply to NYC_talker

I read the story of Paulo1968 of course it s not a good sign having radio after surgery. But if it s needed ... I understand the argument gay or married. The surgery is ok for the married man with wife in menopause that wants to stop sexual activities and getting sperm allover. For gay people sexual activity and sperm are important. It s very hard for me to deal with this. It s not the first time in my life that i had to "change" my sexual life. Same before getting married, when divorced. What is you occupation that makes you avoid surgery ?

Rustykia profile image
Rustykia

Take your time making the right decision. PC changes everything regardless if you decide radiation or surgery. I decided to go with RP surgery knowing that my life will change forever. But no regrets because like you, I was in my mid 50’s when I got diagnosed and I want to cure this desease once and for all regardless of the side effects. Yes, I miss the sperm and the fact that I was a total top before RP, but now I discovered that with daily doses of Cialis, I can get erections, I can be a total bottom (passive) having the best sex and orgasms ever. I get full erections, but not as often as I did before surgery and I can top (active) once in a while, but the passive role I have now is by far much better, so much so that I’m now on Truvada (PreeP) because I have multiple partners. I was lucky that I did not experience “leakage” beside the first 3-4 months post surgery. I have not explored shots of any source for erections because as I said before, playing a “passive” role is exactly what I wanted and I love it. Looking back, I think my decision was the right one for me, but it may not be the same for everyone. Talk to more people and other doctors before you decide what therapy you want. It is your life and your health. We are in this together and this group helped me to cope with the same anxiety you have today. All the best to you. PS, I’m also from Europe living partime in the US and Spain…sex life is great in both places :)

cpl901 profile image
cpl901 in reply to Rustykia

Thks for your answer. How long ago was the surgery ? Are you cancer free with no PSA ? What gleason did you have before RP ? How many time did you take to decide ? You allways have 5 mg Cialis a day or do you stop sometimes ?

Rustykia profile image
Rustykia in reply to cpl901

surgery was on Oct’19 and cancer free since then. My Gleason was 4+3 and my PSA now is <0.2 or undetectable with regular checkups every 6 months. The daily dosage of Cialis is 5mg and it works like a charm. Although I should take it daily, I do not do it all the time as it stays in your system for up to 72 hours

Rustykia profile image
Rustykia in reply to Rustykia

By the way…Grüezi.. I’ll be in CH in four weeks

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