Hello all. I am a 53 year old gay man and I have had raised PSA since 2020. My urologist performed a DRE and felt nothing and decided that we should watch the number and see what happens. 1 year later, the urologist decided to send me for an MRI and it showed no signs of cancer. Feeling relieved, I went on with my life agreeing to repeat my PSA bloodwork every 6 months. Unfortunately, the number kept creeping upward and this year, my urologist decided we should do another MRI. This time they found 2 lesions. We immediately scheduled a biopsy and cancer was found. The urologist immediately told me that based on my age, he felt that I should get a prostatectomy. I left the office feeling so sad and so scared and I having a tough time deciding what would be the best treatment for me. My partner feels that surgery is too extreme being that my Gleason score is 3+4=7 which as you all know equates to low/intermediate risk prostate cancer. As a gay man, I am so concerned about the side effects on all of the procedures but I am too frightened at the thought of the cancer spreading and taking my life completely. I hate to think that sex is such a major part of my life but I am young and it is!
So unsure what to do...: Hello all. I... - Prostate Cancer A...
So unsure what to do...
Hi,
I am sorry you are going through this. I have had this mother of a disease 18 years. I was diagnosed at 45.
My Gleason was the same as yours. Unfortunately, when diagnosed it had already spread to a lymph node, so prostatectomy was not an option. Last year a PSMA PET scan verified it had metastasized to about 8 places in my bones. My advice to you:
1. Research different treatment options. Ask your doctor questions. If she/he will not answer your questions, that’s not a good sign.
2. Get a second opinion if you want to know what another doctor thinks.
3. Bring your partner to your medical appointments. He may be more level-headed and ask questions you may not think of.
4. If it was me, I would opt for the surgery. If the cancer is encapsulated within the prostate, get it the hell out of your body. No, I don’t have any love life or a partner for that matter. But, I’m STILL alive.
Saying a Gleason of 7 is not agressive is bullshit; I can attest to that.
I don’t mean to come off as rude; just brutally honest. PM me if you have questions I may help you with.
I wish you the best of luck. We are all here for you.
Mark
"The urologist immediately told me that based on my age, he felt that I should get a prostatectomy." I think that is idiotic, but I hear it a lot from urologists. Younger age means that you have more good years of sexual potency and urinary continence left. Why give that up?
(1) The first thing you should do is get a second opinion on your biopsy slides from Epstein's lab at Johns Hopkins. If you in fact have no or very little pattern 4, there is no reason you can't just stay on active surveillance until there is further progression. Here's the info you need to send your slides:
pathology.jhu.edu/patient-c...
(2) if treatment is in your cards, you owe it to yourself to get opinions from expert practitioners of other therapies. After 12 years of running gay prostate cancer support groups, I have come to the opinion that gay men should never have prostatectomies. Read this:
prostatecancer.news/2021/12...
Where are you located? I may be able to recommend some experts in your area.
I am in Connecticut and have made appointments at Memorial Sloan Kettering for a second opinion.
At MSK, make sure you talk to Sean McBride about radiation. He is gay, and will understand what you are going through. MSK usually requires their own second opinion on your biopsy slides and are as good as Johns Hopkins, IMO. If you stay on active surveillance, talk to Behfar Ehdaie about it. He isn't gay, but will understand. (Only don't let him talk you into his HIFU trial.)
Good morning! I wanted to than you for your advice and fr all you are doing for the community. I have decided to go with Cyberknife @ NYU Langone.
Thank you so much for the advice!!!
Whatever Allen tells you trumps anything I can recommend!!
I understand you fully and you are going in periode of hard negociation with yourself. My story is similar PSA rising every year, MRI (pirad 3 equivocal) genetic test, and finally accept biopsy with result 3+4. That was december 22. Now i m 3 days post surgery…but in the last months there was an incredible deal with myself. Just take your time, informe yourself. I feel i m entering just now a new world. First important health issue…i m 57 , bi, had familylife, one son 20. Im still or was ?! sexual interested and activ. Partner and good friends. I want to get a nice old little man.
I am 55, gay, partnered had a Gleeson score of 3+4=7 and had a prostatectomy 3 years ago. I still have strong erections, no incontinence, no scars and have moved beyond the decision. It is with me and part of me. My life has returned to normal. I don't regret it because I know the Cancer has gone (as much as anyone knows in a similar position). My thoughts occasionally think about what about if I had chosen a different option. I think my mental health would have suffered. I would have thought about it a lot more and it would have defined me more than it does now. There are people on here who will tell you gay men shouldn't have a prostatectomy and other gay men who have done exactly that. It is your decision. You are the one who will have to live with it. You are young, you have years ahead, and your body is better at healing at your age than in a decade or two. I wish you nothing but the best outcome whatever your decision. One thing is certain if you do decide on a Prostatectomy, get the best surgeon: It makes a difference.
Same story as Chuck67. I completely agree. It is not forbidden for gay men to have prostatectomy. I m 10 days after RP and continence recovered nearly, having little night erections (swelling) what i dont really want at the moment, i will play later, but looking foreward of my life without the stress of cancer. I had a hard period after diagnosis psychologically. Psma pet scan was negativ before surgery and margins negativ after surgery. Surgery is not a relaxing party, now i have some physical problems (10 days after RP) but i hope and think it will resolve. Choosing the surgeon is important.
I would definitely investigate SBRT. I just finished and made it with no problem.
Get a second opinion and look at other options.
The decision to have surgery or some other other kind of treatment should not be based solely on your age! Take your time. And there is no way of knowing how serious the side effects of surgery would be. In my case I was left with diminished sexual function and incontinence severe enough to have another surgery to improve it. While I don't waste much energy thinking "you should have done radiation instead" (what's done is done) the fact is that if I had the decision to do over again I would have considered the other options more thoroughly (I had not yet found this group). Yes, 12 years later I'm still alive and grateful to be so and grateful to be very physically active (and I'm not retired) at 80. But.....
you should definitely consider all the options. I chose CyberKnife but MSK offers a similar procedure which was called MSK Precise at the time. There are other options as well so take the time to inform yourself and you’ll be guided to do what’s best for you in the end. Wishing you great success whatever path you follow!
I think we have all been in that initial shock and scared phase and it takes time to absorb what's happening to you. Sex is very important for most gay men, which is why I suspect this forum was created because we do have a different attitude towards sex than most straight men.
I just completed stereotactic radiation treatments (SBRT) and I'm 52 and had a Gleason of 4+3. I was also pushed toward surgery based on age, with the explanation that younger men tolerate surgery better and recovery more easily, but I did a second opinion, research from those provided here, and also some studies showing the efficacy of SBRT vs prostatectomy over a15 year period (study via New England Journal of Medicine) that showed a very small percentage of difference. My rad onc doc was amazing, took time to give me info to research and that was my ultimate route.
This is a fantastic place for support and info and I think you'll find so many useful experiences from others here. Everyone's journey is a little different, so definitely take the time to process emotionally to let yourself get to a place where you can make the best decision for yourself. There's a lot of info out there; it's easy to get overwhelmed. If you're like me, you'll know what works best for you in the time you need it. I took 6 months and decided that for me the risks for radiation vs surgery were worth it for quality of life post treatment. I wish you the best, and you're always welcome to share your journey with us!
I echo the sentiments here about what you're going through. I had the same score (diagnosed March 2021) and opted first for active surveillance for one year. The tumor was located solely on the right side of the prostate and was considered large by my Urologist. I investigated Cyberknife and HIFU. Fortunately, for me Nashville (where I live) has experts in both treatment types.
I opted for HIFU (which I see is not supported by commenters and portions of the medical community), but I had two Uros confirm to me that I was an ideal candidate. I had HIFU treatment on the right side of the prostate in March 2022. I had a catheter for 7 days, and after that only minor side effects until complete healing.
I have not had any incontinence. I can achieve erections without devices or medication successful enough for masturbation (I'm 68 -- my partner and I no longer practice penetration, so this is fine for me and him). The only difference is I now ejaculate internally and not externally. Nineteen months post treatment, my PSA remains at .2 -- I still have the left side of the prostate so I will have a PSA score from it.
A lot of information will be thrown at you. Take your time to understand it and consider all your options in discussion with your partner and additional medical opinions to decide what is right for you. I'm happy with my decision to have HIFU.
Hi. I'm sorry that you're having to join this club.
I'm gay and was 52 at diagnosis with a PSA 5.0, a Gleason of 3+3, and a positive DRE. In retrospect, I probably rushed my decision to have a prostatectomy.
Going into the RP, the surgeon was going to try to save both nerve bundles, but during surgery, he said that the mass that was felt during the DRE was too close to one bundle, so it took it out to be on the safe side.
My PSA returned just short of the 5-year mark after my RP, and continued to grow at a very slow rate. I had salvage radiation therapy last summer, and we're still monitoring its effectiveness.
It took me the better part of 6 months to become "dry" when it came to incontinence, but regaining erectile function took the better part of 18 months or so. Even at that, my erections were in the 70%-90% range, and it took a while to get used to dry orgasms. Since the radiation, my ED has worsened.
I was single at the time of diagnosis (and still am), so the ED has been kind of a non-issue for me. Although I still hove some hope that a relationship could happen (I'm 65 now).
As others have suggested, you have time to do your research and ask tons of questions of multiple doctors. Would I do the surgery again knowing what I know today? I don't know. What I do know is that I made my decision with the information I had available to me, and I can't change it at this point.
If you want the gory details of my experience, I've been blogging about it since the beginning. You can see the blog URL in my profile.
Wishing you all the best with your research and decision.
So sorry to hear about this especially for such a young man. I would consider SBRT if your a candidate. After speaking to many doctors in different fields, much discussion and especially help from the people on this site, we were glad that we chose SBRT. My husband who is now 60 and I am 72 have been together for 33 years both were diagnosed with prostate cancer a week apart several years ago. Numbers 7 and 9. We considered all forms of treatment and eventual had SBRT. Numbers continue to come down with each PSA test. We have had no side effects whatsoever and still enjoy a very active sex life. I would definitely take the advice of Tall_Allen. We certainly did. He is a wealth of information and experience. Wishing you all the best and much success with your decisions.
Good afternoon. Would you mind if I asked... What was your PSA at the time of the SBRT? Did you need Hormone Therapy? So much information is being thrown at me, just trying to figure it all out. Thanking you in advance.
My PSA had gone as high as 9.2 and my husbands had gone as high as 7.2. No hormone therapy was administered. Blessed to have had no ill effects. Wishing you much success with your SBRT.
I hope that everyone sees this. I wanted to thank everyone for all of the responses and to everyone that shared their stories. I am still in the decision making process. I have made appointments with 2 other doctors so I will have a total of 3 opinions from 3 different doctors. At that point, my partner will need to sit down and talk this through. From everything that I have learned, I really do not think surgery would be an option for me unless it was life or death situation. I will continue to update everyone!
Welcome to the club!
How lucky we all are to have such a wealth of information, knowledge, experiences and lots of opinions. I often think back to 10,15, 20 years ago when the only resource a man had was their Uroligist . I have to assume the word gay never came up in any of those conversations.
After a lot of research I chose RP 6 years ago and have no regrets. I also live in CT and found an amazing surgeon at Hartford Hospital.
Wishing you the best, there’s no right or wrong it’s what you feel is best for you…
Namaste-
I'm afraid I don't words of wisdom to comfort you. The word cancer says it all. It fills us with despair and hopelessness. I went through the same thing your going through. I was so scared. The biopsy show the prostate full of cancer yet my Gleason score was not a 10. I went through with the surgery and in part I do regret it because sex has not up this point been an option, but I had to make a decision and a choose life. I lost a lot that year. My spouse of almost 50 years died 2 months later.
Hi,
I can understand you fully. I was also diagnosed december 22 with a 3+4 after a couple of years having my PSA hovering around 5 and 6. I finally did surgery 27 sept 23 and i m happy with the decision i did. My first PSA came back 0.00. I m dealing now with a rest of incontinence specialy when i m tired physically, and of course impotence wich i knew when i choose surgery. Potency is coming back but slower than continece. Living as a gay i didnt want to put sex in my priority of my quality of life, there are other things. I will try to recuperate as much as i can.
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