RP Aug 2018, Depression Jan 2019 - Prostate Cancer A...

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

Boston1967
Boston1967
31 Replies

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

31 Replies
oldestnewest
Tall_Allen

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

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Boston1967

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

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YostConner

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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ctarleton

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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Boston1967

Thanks Charles, this was actually very helpful!

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EdinBmore

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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James789

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

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billd9946

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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Dreamweaverman

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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Boston1967

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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MarkBarnes

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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Boston1967

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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TBDLATER
TBDLATER
in reply to Boston1967

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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billy1950

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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Boston1967

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

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NashTim

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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Boston1967

Sounds good Tim, thanks!

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Kneedy

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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Boston1967
Boston1967
in reply to Kneedy

Thanks so much! The support here is really awesome!

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pangi

Hi Norman:

I had reoccurring UTIs after a botched biopsy this past July before I had surgery one week ago. Have you tried D-mannose? My friend, who is a NP, suggested that I begin taking it. It is a supplement that comes in either capsules or powder and blocks certain bacteria (like e.coli) from growing in the urinary tract. Good luck!

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Boston1967

Thanks Pangi! I will investigate

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colins999

I so understand what you're going through. I had to have a second surgery to correct the first. i amm2 years away from my surgery and quite happy now. Even though I do not get an erection or shoot sperm I still can have an orgasm. Quite satisfy I might add. you are at the first stage right now and I'm sure you have peeing problems, they will pass. (A little tougher in the cold. I live in new york and I know.) hope this helps i have talked to a few people around the country trying to help.

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Boston1967

Thanks Colin

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NashTim

Hey Norman, since you have not been able to find a local support group in Boston, seems like you, TBDLATER and MarkBarnes should all get together and chat with each other....I sure wish there was a gay support group here in Nashville...….

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rsmith425

I am 9 yrs post radical proctectomy. I am new to this group. I have been on the FB Prostate Cancer group for the last several yrs, it barely touch on how prostate cancer relates to gay men. Your post is the first I have been able to identify with. I received very little support from friends or family, as none of them had ever been through this. I have had incontinent surgery (didn't work) and penile implant....which works fine, but try explaining this to a potential date. Thanks for your post.

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EdinBmore

Don't mean to be a smart ass but: welcome to the club! You are correct: PC and whatever treatment you have IS life changing and NOT in a good way at all. It's a total mind fuck, in my opinion. And, I do not think that doctors - at least mine - were particularly good at preparing me for what was in store. Maybe they think we'll change our minds about treatment?! Maybe it scares them, too? Dunno. While I heard what they told me ("oh, no ejaculate, but you can have a 'dry' orgasm." Like what's the big deal anyway? "There are some side effects to hormone therapy but we can treat them, too." Oh great, more drugs! "Your genitals may shrink, by the way." You won't be using them much anymore, so, not to worry!" LOL And, so on.) That being said, I did have one or two docs who genuinely seemed to care and empathize with the emotional roller coaster I was on. I told them how much I appreciated their comments.

How to cope? I guess there are a couple of things that gave me some sense of control (which is what I think the depression is all about). Read and learn as much as you can about PC, even though you've already had treatment. Talk with your friends; you may find one hell of a lot of support there. Be as honest as you can with your doctors. Tell them what it's like to be you. Cliche, I know, but try to "eat right," exercise (I've found this to be extremely helpful. It seems to counter some of the side effects of hormone treatment and, perhaps, of RT,too; gives one a sense of control, and forces oneself into a routine.)

And, know that you are not alone. Each of us has been "there," and I think you'll find a lot of understanding and comfort from sites like this.

Good luck to you, man.

EdinBaltimore

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Boston1967

Thanks Ed, you are right about this site!

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Terp2017

Hi Norman,

I agree we are TOTALLY unprepared for this major life changing experience. I had radical surgery 2 yrs ago. I think there is a mourning process that we go through over the loss of our old self and the insecurity of the new that we don't know. I still grieve the loss, and the weather and winter in the N.E. can amplifier it.

Still it is an amazing thing to be here, to be loved and love. I found I need to step out of my comfort zone and get involved with new people. Started going to a Buddhist group to help me grow and joining meetup groups.

I hope that might offer a little light, and let you know you are not alone on your journey.

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Boston1967
Boston1967
in reply to Terp2017

Thanks Terp!

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Bcgkelly

Hi Norman,

Just wanted to say hi, I missed your post when you put it up first. I’m a single gay man as well 56 years and prior to surgery enjoyed a good sex life. It’s a tough road there is no doubt. I hope you are doing better than you were. After surgery I thought that no one would ever want to have sex with me again. Although I haven’t been able to get usable erections, a regular guy that I have been meeting for a few years has shown me its not the case. While it’s not the same it’s better than I thought it would be. I have found it’s important to talk, to friends, family and am getting some counselling. It has all helped. Still trying to get the Incontinence under control and have tried the pills, pump and injections without full success. Only thing left is an implant as nerves were not spared due to the spread of the cancer. I’m looking into it at the moment and may have it done after radiotherapy is finished and healed. Try keep the head up and do something every day that brings you pleasure.

Take care,

Bill

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Boston1967

Thank you Bill, things are already better.... not perfect...but better

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