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Prostate Cancer And Gay Men
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RP Aug 2018, Depression Jan 2019

Hi All,

Just introducing myself here. I’m a 51 y/o gay man diagnosed with prostate cancer in May 2018. Elevated PSA (8.9) and Core biopsy Gleason score 7 (3+4). I under went a Radical Prostatectomy in August of 2018. My physical recovery is going pretty well... with the exception of a lingering UTI. I’ve had 5 courses of antibiotics and hope it’s finally gone. I feel like I had this major life changing event and basically was sent back to society totally unprepared to deal with living without a prostate as a formally sexually active single gay man.... I stumbled upon this site while doing a web search for gay men with prostate cancer on the web..... having a tough time 4 months post surgery mentally and am looking for suggestions on how to cope.

Thanks,

Norman

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Maybe there's a local support group for gay men?

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I have not found a local support group for gay men yet, but I have been looking

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Are you clinically depressed? If so, counseling may help. You might even consider a mild anti-depressant. If that’s not it, then work with your urologist to get (keep) your penile rehab going. And don’t get bogged down by sex roles. When you’re ready to get back in the game, just have fun.

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Sometimes some knowledge and awareness of available resources can help put things in perspective. You are not alone.

You might find some value in this presentation made by Dr. John Mulhall of MSKCC in recent years to a Prostate Cancer Conference held on the West Coast in recent years.

Some aspects related to depression are mentioned here, too.

mskcc.org/clinical-updates/...

Face-to-face prostate cancer support groups can also be good for sharing stories and concerns, e.g.,

ustoo.org/Support-Group-Nea...

Just some thoughts....

Charles

P.S. As an advanced metastatic prostate cancer patient myself, I've been on Lupron for a little over 5 years, between ages 65 and 70. Not having any libido and having atrophying "junk" is a long term thing I still deal with, despite my natural age.

Ah the memories.... Ha. Ha.

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Thanks Charles, this was actually very helpful!

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Welcome here. I, too, stumbled upon this site and am glad that I did. Chatting with those who have "been there" helps.

If there's one area that I've found lacking during this ordeal, it's the lack of emotional support from the medical people. They have the physical routine down and can walk us through what's about to happen to us physically, but, they seem to me to be woefully unprepared for dealing with our emotions. In less than 6 months, I've been given hormones which devastated my sexuality, had EBRT, and a brachtherapy boost. The side effects of any one of these are daunting but, in combination, whoa, dude. And, despite my telling the doctors about the roller coaster ride of emotions and profound sense of grief ( a lot of loss when dealing with prostate cancer), they just seem to brush it off. I suspect they simply don't know what to say or do; they can't "fix it" with a pill or a procedure. A simple, "how are you feeling about all of this? what's it like for you?" would help immensely. The best I got was from a young radiation oncologist who seemed to actually listen to me when I told him about my sense of grief regarding my sexual self. His response? A very genuine, "I'm so sorry that you're going through this. I can only guess what it's like. It really sucks, man."

EdinBaltimore

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I was 53 when I had mine done and it is a mind changing experience.

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Being in this situation is mind altering, to say the least. I have moments of total despair, but keep reminding myself that mental or emotional state plays a huge part in recovery, or not. One foot in front of the other... there is no other way...

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Hey Norman, I totally identify with your situation. I too was diagnosed in May and had surgery in August. Since then I still have had PSA 1.4 so I am starting HT today and following up with RT in a couple months. While I am committed to remaining optimistic, this whole experience has begun to wear me down a little.

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Hey there, thanks for the your reply! I’m sorry to hear about hour PSA number man.... that sucks. I get the wearing down...On the outside everything looks fine, and on the inside I am struggling everyday. I feel like I struck gold by finding this sight. I called for an appointment today at the ED clinic. I got a pump 2 months ago, tried it once and was so overwhelmed trying to get it to work properly that I haven’t taken out again. My surgeon is a really great guy and skilled surgeon, but I don’t think he knows a lot about the penis rehab importance to a gay male. I finally feel like I am doing something about my recovery and actually felt some optimism creep in today.... I almost forgot what that was. It’s so good to know I am not alone. My friends and family have been amazing, but not the same as someone else who is going through the same thing. I wish you the best and I hope to continue to share with you!

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I too am in Boston, had a RP last week. Gleason 3+4, 12 positive cores, with a bulge, so I was classified as unfavorable intermediate. The path report came back very good (negative margins, no lymph node involvement, no protrusion), and partial nerve sparing on both sides.

I completely agree about the lack of emotional support. I went to BIDMC, BWI/DF, and MGH. I only had a quick visit at MGH..I didn't like the doctors but felt that there was more support there. At BWI/DF they have a social worker (who I'm pretty sure is gay) who knows about prostate cancer, and visits with him were free and didn't require insurance approval, but I was a patient at BWI/DF at the time (I got my treatment at BIDMC). And while I'm relieved/happy about the path report and confident in my surgeon, his practice is a factory. None of the hospitals and doctors even knew of support groups in Boston; one of the surgeon's admin assistant got me the referral to the social worker at DF after I specifically told her I was having a hard time with things; she said she'd look into it, and she did, but I was really surprised that this was not common knowledge to her or to the surgeon she worked for.

TBH, this site has provided more support. That being said, there are 3 support groups that I have found and I like them all. One is at Boston Medical (I'm not a patient there, but they don't seem to care). They have a nice pamphlet about support services, meetings, yoga, and lots of other stuff. It's a great way to get support. BIDMC has a monthly meeting that gets about 40 or 50 people, and always has a medical professional (usually a MD who does research) giving a talk. And the best of all the groups was PHEN, which is focused on black men. When I went there it was very friendly and inclusive, and they had 2 doctors that were willing to speak to attendees individually. And they had really good food and snacks. PHEN meets at DF. Again, so surprising that even the social worker at DF didn't know about this monthly meeting. Let me know if you need more info about any of these 3 groups. I began attending in December (although some were cancelled for December/Xmas), and January was out for me because I had surgery, but I will be attending in February.

Stay in touch...you're the only gay man I know in Boston going through this.

Mark

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Hi Mark,

I hope you are feeling better... and that someone is taking good care of you right now. The first couple of weeks were really tough for me, but I had a lot of support from family and friends that helped a lot. The only really good thing about this whole process is that I did not have to cook a meal for like 2 months! I knew about the group at BIDMC, but also knew there were not many if any gay men. I have an older friend that attended for a few months that is doing watchful waiting. I had my surgery through DF/BWH. Most of the after care is at BWH and no one seems focused on penile rehabilitation except me. It’s been a very disappointing after surgery process. What is PHEN that meets at DF? I’m not familiar with that. Maybe I will join you in February at BIDMC. Please keep me posted on how you are doing. You will be a new man when the Catheter comes out! All the best! Norman

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Hey Norman & Mark. Well, I guess I am a 3rd here in Boston. I am new here and I still need to do my 'introduction', and I will, but I too have been looking for a gay man's support group. I also have Major Depressive Disorder, which is what they now call Clinical Depression, and have been in therapy for several years now - individual and group. I'll get my sh*t together and get my introduction ready. Thanks.

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Norman,

MarkBarnes hopefully has given you a lot to go by...

I was diagnosed and treated in 2004-5 at

age 54. (I'm68) and gay living in Upstate NY. (The local hospital just recently ended their support group which, I believe was due to a lack of attendees).

My situation is that I had radiation with a PSA of 6.9 and Gl 6...I was impressed more by the radiation oncologist. (So far, no hormone therapy.)

In the event of depression, I also would encourage you to be on some kind of anti-depressant...after living an sexually active lifestyle the change can be difficult. What helps me is my exercise routine in swimming 3 times a week...As time went on my erections have basically disappeared. At 68, I kind of don't mind!!! Additionally, I never wanted a penis pump.

Thinking out loud, I would believe that there are other gay men in and around Boston who have been treated for PCa...have you possibly thought of starting a MeetUp group.

In any event, keep talking to and meeting guys and see where it all goes...the best to you!

Billy

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Thanks Billy, I will take all the help I can get!

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Hey Norman.....pretty new to this group but the guys on here seem to know what they are talking about, its good to listen and become aware of what is happening to your body so there are no surprises.....

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Sounds good Tim, thanks!

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Sounds as if you have gotten some great info here and some resources to check out. Just wishing you the best and understand only someone that has walked down the same path can really understand the emotional and physical trauma. Even though many are similar each of truly has a unique experience but it truly helps to learn all you can. Knowledge really is power.

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Thanks so much! The support here is really awesome!

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