The stigma of Prostate Cancer.

My wife was recently speaking to an female aquaintance. The woman is in her 50s and has been divorced and not dated

in over 10 years. She said she does not date because she does not want to have sex with anyone. She stated she wishes she could meet a man who had prostate cancer as he would not be able to have sex with her and she could have a companion. My wife had not told her that I had a Radical Prostectomy.

I believe that most people do think that it is not possible to have sex after prostate cancer.

Four years after my surgery, our sex life is just as great as ever. Cialis for one year and after that natural erections med free as a result of my nerve sparing surgery.

Even some of our closest friends and relatives, I am sure think I am lying when we tell them it "works" as well as before.

Has anyone else found themselves in this situation with others who believe that all prostate cancer results in complete impotence?

 

I have two older brothers and one older sister and not one ever asked me about PC, side effects or for that matter how I'm doing post surgery.

Before my PC journey began I had heard that if you had an RP you wore diapers the rest of your life and had permanent ED. So far in my journey I am 1 for 2, I have been fully continent but ED is nearly 100% without injections. I have been fully open about my PC with family, friends and even most business associates.  I believe open discussions about PC, diagnosis and screening is the only way men can continue to bring down the mortality rates of this terrible disease and end many of the misconceptions about the side effects. I talk about my surgery and continence but the ED issues I am more discreet about and only bring it up when asked. In my case the fear of wearing diapers the rest of my life was more important than having sex again at my age.

Terry

plenty of people are ignorant about a whole lot of issues. I wouldn't let it bother you.

When people ask I tell them i'm back to normal without side effects probably as a result of my age and the skill of my surgeon. I also throw in "luck" every time I discuss it. Whether they believe me or not is not a concern of mine. We don't talk details because that would be weird. They just say that they're glad I got over this crap. Then I remind them "for now"...

I'm 42 and my friends range form the ages of 40-60. Somewhere in between that age sexual performance starts to slip regardless of PCa. But it certainly isn't something we discuss.

I think the only real issue that requires looking into, not by us of course, is why your wife's friend doesn't want to have sex. While you and I have no issues with sex, in fact it's better in my case now after looking at it as rehab for a year, you're wife's friend on the other hand does have a problem with it.

I think the issue here might be stereotpyes with being macho.

I agree with Rodney/Oldphoto regarding any alleged "stigma."   **** 'em.

Why would anyone expect someone who didn't have PC to know anything about it. Just because our lives revolve around it it doesn't mean that others lives should. I doubt that few of us know what blindness or being a parapaligic feels like.

When I told my mother, who has been in the medical field all her life, I had PC she just said, " I hope you take care of it." and never asked another question except the common "how are you doing" every once in a while.

Unless it concerns them personally, most people don't care much about the side effects you may have; they think more about what they are going to have for lunch.

 

i think our age differences might contribute somewhat to how our loved ones and inner circle might react. At 40 my parents and siblings were very involve din this entire process with me so without getting into exact details, they would ask about side effects and how I was doing/coping emotionally with it all. Close friends also.

I think they asked just as they would have asked with any form of treatment. People asked me the same when I got a herniated back and was having serious side effects from that.

If I were 60-70 it would probably be just my kids asking but that goes with the territory.

However, I really wouldn't let the friend of your wife bother you. She is so far removed emotionally from you she has nothing invested in knowing.

It's interesting, the different perspectives. I figured people at work were going to be talking about it (the rumor mill) so it was better to give them some facts, rather than let them make them up.

Now that the side effects are real and I'm back to work (a couple weeks now) it is a bit harder to answer the question of "how are you doing." I usually reply that I'm dealing with the side effects and that every day brings some improvement. Day-to-day they are hard to observe, but week-to-week I can see the changes.

John T. describes how it is in my world. After the first few months of recovery, most people never even bring it up anymore, if they even remember it. There's a couple other guys who have walked this road in my church and we keep up on each others progress, and their wives even remember to ask, but as a whole, after 4 years, no one outside of the victims circle even remembers any more---I think. Hey, that's ok, I understand. I've done the same thing with their and their families illnesses, so no big deal on my part. If asked, I an open about it and will discuss it, maybe even into too fine a detail, but it doesn't bother me to talk about it.

I also believe that lots of people have the impression that sex is not possible after PCa. They may know little else, but they have heard that part. I have just recently heard two different comments to that effect in the media....along the lines of "oh well, he was too old to want sex anyway".

Since you'd look like an idiot trying to make sure other people didn't have the impression that you can't do it, you basically just have to let it go. I know that is painful, and I have noticed some of that sensitivity on the forums.

Years ago, before we knew much about PCa, a man at our church who had had a prostatectomy was caught foolishly trying to make a pass at a younger (married) woman. His wife told someone that he couldn't have done anything about it anyway, as he was completely unable to have sex, and the whole embarrassing story got spread all over. I know my husband remembered that, and it is practically the first thing he thought about when he got his diagnosis!

Juliet

Jeff

Right - you explain that to your lovely wife.

I'm sure we can arrange to have folks visit you at the hospital for at least the first few months.

Bud

PS Hey you DO know we are all coming to your house in Sept right?

While I agree with most of the comments here (including the one about the vast untapped market for limp noodles ), I have another perspective.

There is definitely a stigma attached to this; it's the stigma of incontinence and ED. No prominent men want to stand up and say what this does to you. While this is understandable, it's also the reason why research into less destructive treatments gets such a low priority.

Starting in the '70s, prominent women started speaking out about breast cancer. Betty Ford, Nancy Reagan, Shirley Temple Black and many others spoke very publicly about their disease and what the treatment did to them. People came to understand what it meant to a woman to be disfigured by mastectomy, and less destructive treatment alternatives soon followed.

Until someone like Robert DeNiro (who declined to say how he's being treated) can be as candid as someone like Kate Jackson (who publicly discussed in considerable detail her mastectomy and how it left her), prostate cancer treatment and its side effects will be in the shadows. Certainly Mr. DeNiro is entitled to his medical privacy. The problem is that his is an all too common reaction.

Until some prominent men are willing to shake off the "stigma" of prostate cancer and talk as candidly as these women did, this disease will be widely misunderstood and its effects will be widely underestimated. Until men come out of the prostate cancer closet, there will be no public pressure to develop treatments that don't rob men of their continence and potency. Instead, we'll hear more calls to end PSA testing.

I think that the comparison of breast cancer and prostate cancer being made is not the most valid. Breast cancer, besides its risks of long term illness or death (as with PCa), takes away a factor of appearance. That is often repaired with restorative surgery (more than one young lady has decided to show me what a good job they did). But, it does not generally render the survivor unable to reproduce.

I would rather see a comparison to ovarian cancer. I have a couple of lady friends who have come to understand my situation much better than the rest. Why? We are all unable to reproduce. The surgeries we've undergone are "hidden", but equally devastating. None of us has any external disfigurement, but none of us will have children.

I was "set up" with a lady who was interested in meeting me, and not the least bit concerned when told I had PCa. As the evening went on, she got bold (or at least so I thought) and asked some pretty specific questions about "functionality" and what I expected might happen in bed. When I explained that there was some hope that pills would one day work, or that shots or implants were always an option, she bolted. I later learned from those who set us up that she was looking for a money clip and arm candy without any obligation for a roll in the hay, potent or not.