What do you wish your doctor spent more time discussing with you, relative to being a Gay or Bisexual man with prostate cancer. We'll use your response - anonymously - in our new Gay men and prostate cancer booklet. Please either reply below or send me an email. Darryl firstname.lastname@example.org
Things I Wish My "Straight" Urologist... - Prostate Cancer A...
Prostate Cancer And Gay Men
I wish time would have been spent on the probability of Peyronnies disease and the fact that it affects penis size.
Actually, I have no complaints. Seattle Cancer Care Alliance makes it a point to be informed, open, and accepting. My husband is welcome in all clinical consults, and my Physician's Assistant, who I see more than my medical oncologist, is a gay man with deep knowledge who is also listed as one of the best PA's in the city. When I see him for an appointment, we laugh a LOT. My medical oncologist is deeply involved in research and is listed in the latest list of best physicians in the city as the top medical oncologist. I'm very lucky to be the patient member of this team.
My doctor did not address sexuality at all. I wish he had been more truthful about the probability of sexual and urinary side effects of a radical prostatectomy. I asked about them but he dismissed them as possible but not likely. He did point out that they had sexual rehab should it be necessary but either had no clue to the actual toll it takes on a gay male or didn't care. I was totally unaware of the effect on penis size which is perhaps partially my fault for not uncovering in my research. I sincerely wish I had a "do over".
This is a hard question to answer for me. The urologist who diagnosed my prostate cancer moved out of state soon after he diagnosed me. I didn't think much of his replacement so I began meeting with different doctors--not exclusively urologists--to learn what side effect(s) the treatment they specialized in would mean to my sex life. I choose bracytherapy. The radiologist/oncologist who performed the procedure was gay friendly. But in retrospect I wish he'd told me that the intensity of orgasm would diminish and ejaculating wouldn't be the intense experience it was before the procedure.
My doc was pretty good and pretty open. But I think things need to set out more clearly--some more specific commentary on the effects of RP (what I had) on sexual functioning and incontinence and other things as noted above, and what resources will be available for rehabilitation and other needs afterwards. When I asked about these things the info was always available, but I mostly knew what to ask about. I have a casual (straight) friend who had surgery (a different doc) and didn't have a clue and didn't know any of his friends like me had gone through this. He was totally surprised at the effects afterwards. So obviously this applies both to gay and straight people.
I was told about the possibility of leakage and what could be done about it later if need be but I was never told I'd lose some size in my penis. I was told if I was lucky I wouldn't be affected by ED but we could deal with that later also. My husband was welcome at every appointment but i did have to drive 2.5 hours to get to my urologist....there were none I liked nearer to me.
I don't have many complaints, because I guess I placed a lot of questions and my doctor then reacted to my questions. However I wished he could have provided the information as a guide and not because I was inquisitive. I said just from the beginning I was gay and my partner attended the first appointments, so the doctor was open, but I missed some details of how cautious should we be after surgery in sex. For example, I am not certain yet when is it advisible to start receiving anal penetration after surgery.
The urologist who did the diagnosis and biopsy offered nothing about side or long term effects. He gave me a 3 page book to look at with one form of treatment on each page -- it was printed on heavy cardboard like those books for pre-K kids which I found inappropriate and insulting -- he gave me a few minutes to digest it and asked for my choice. With my diagnosis today I'd likely be put on Active Surveillance, but to this doctor I was just a procedure to do. When I asked him if there were any special concerns for a gay man he quickly moved to behind his desk -- body language tells so much!! I never went back. I went to a major teaching hospital and interviewed with the radiation oncologist there, he was very gay supportive. Indeed he said "our gay patients tend to do better on the side effects and recovery because they are more sexually active and aware." After my 40 days of radiation I found another urologist in a research/teaching hospital closer to home. When I identified as gay to him he said "there's nothing special about being gay". I had just read the recently published book "Prostate Cancer and Gay Men" and offered to loan him my copy -- he declined.
I am seen for several reasons at two hospitals, one regional, one a med school city hospital; both vigorously claim to be LGBT friendly. Friendly, yes; but awareness and understanding of our special concerns and needs, not so much.
My surgery was done through a VA Hospital, (Veterans Administration) in 2010. I was given the impression, through slight comments, that there are no military Veterans who are gay. Everything is geared toward straight men. So as to ask questions about sex between males after prostate surgery, no way. When I was told that I had prostate cancer, the urologist gave me a pamphlet, which I actually thought was a coloring book for some kid. He told me I had two weeks to decide on what procedure I wanted to have done, if any. It was through website such as this, and a lot of research on the internet that I learned a lot. What is ironic is that it is in my VA records that I have sex with men only. Does not say that I am gay. No real issues were discussed when I asked, only general replies of what could happen. I have had other surgeries through the VA that dealt with side effects of the prostate cancer, only because I made that happen. Eight years later, hopefully the VA Administration now realizes that there are Veterans who are gay and deal with the issues that we face on this prostate cancer journey.
I know that some will ask why I didn't use my private medical insurance. Reason, at that time, the out of pocket expense was more than I could afford.
As I have said many times before, my primary objective was get the cancer. This was achieved with the Di Vinci surgery. I was told to do kegels before and after surgery to
address any possible side effect and all urinary or ED would be corrected. That has clearly not been the case. I have also done physical therapy and taken various medicines for ED.
I have also done the "pins" at the urology office for urinary problems. I feel that I have done all the correct things and am not where I expected to be five years after surgery.
Any thing I have done beyond kegels has been due to suggestions by guys on this or previous sites.
So to answer your question: my urologist really did not make me fully aware of the possiblity of continally urinary and sexual side effects.
My urologist/surgeon discussed everything with me before surgery. I was well informed. I knew about wearing a catheter, incontinence, impotence, etc.
My urologist does not discuss the side effects or impact of of radical prostatectomy. Which left me to have to figure things out for myself. Since i am not straight i can't answer for how he has advised his hetero patients; but with me i sense that he is uncomfortable discussing gay sex, even in a clinical medical context.
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