Prostate Cancer And Gay Men

Diagnosed mid February and waiting to start treatment

I have posted already in another community, but as I am having a gay relantioship I wondered here I could share something of my story and get something of others' stories from fellow friends.

I am 49 years of age and have a partner but I find these communities best ways of sharing fears and anxieties as well as bravery and happy moments

I only found these communities after my decision of treatment, which was very difficult, but as quick as I could and thought I needed I saw a few doctors and specialists to support my decision.

Before that I did ultrasound, MRI, biopsy and PET exams.

I decided for a robot surgery and my doctor is advising me for an adjuvant RT depending anyway on the pathological report.

I have a gleason 8 (4+4) lesion n0m0 likely t3a. My psa was 12,7.

MRI and PET showed no seminal vesicles and lymph nodes invasion and body scan was also free.

So surgery is scheduled for next Thursday, April the 5th.

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Ola Paulo,

I too, am a financial controller. I was diagnosed in 2005 at the age of 45. As long as you feel confident with your decision. Everyone's cancer is different and reacts to treatment differently. I still have my prostate. I was on a treatment path that included Lupron, Radiation Seeds and radiation treatments. Every so often my PSA will become > 4 and I am started back on Lupron.

Best of Luck on your surgery. Remember to learn to do those kegel exercises.

Mark

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Thanks Mark,

I am doing the exercises already for more than a week and daily :-)

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Mark-

On the off chance that it's still local, consider getting an Axumin scan. About half the recurrences after radiation are salvageable:

pcnrv.blogspot.com/2016/09/...

pcnrv.blogspot.com/2016/08/...

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Allen,

Thanks I will check the links out!

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Hi Paulo,

I know your treatment is imminent, but I have to raise some issues with your plan. First, why would anyone ever have surgery knowing that he will have to have adjuvant radiation? Radiation carries its own side effects, but given on top of surgery, the side effects are magnified. And to what purpose? Radiation, if done right, is much more curative than surgery for the simple reason that it treats an area outside of the prostate that surgery can't reach. Your side effects are likely to be lighter if you do radiation as primary rather than adjuvant after surgery.

Please read about the better results achieved with brachy boost therapy before you make an irrevocable decision:

pcnrv.blogspot.com/2018/03/...

To get brachy boost therapy, you have to find a doctor who offers it - it's not available everywhere. I may be able to refer you to a specialist if you mention where you are.

You are only 49, and have many years ahead of you in which incontinence and impotence will reduce your quality of life. With a Gleason 8, there's a high probability that he will have to cut wide with at best partial nerve sparing. This could lead to lasting incontinence and permanent loss of potency.

Also - slow down! You rushed into this decision in just 6 weeks, which is the worst possible way to make a decision. Our emotional temperature is very high on hearing a cancer diagnosis, and our first reaction is always "just cut it out!" With time, you will be able to engage in a more rational process - even if your final decision is the same. Even with high risk PC, progression is very slow at this stage. In a recent study about treatment delay, they found that treatment delay for more than 3 months had no effect even among high-risk men. This was true whether the final decision was radiation or surgery.

pcnrv.blogspot.com/2016/08/...

You may also find this article on treatment regret useful:

pcnrv.blogspot.com/2017/10/...

- Allen

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Hi Allen,

Thanks for your mail. I regret not having found forums like this before my decision. I am not certain I can / should take that back at this time.

Well I will read through with carefull your suggested articles. Thank you anyway Allen.

I am living in Lisbon - Portugal Allen.

I saw 3 doctors of different institutions and only one advised me for RT + HT over surgery. Even a radiotherapist I went for advise at the end told me I better go first with surgery. I have a counsin who is a doctor and helped me by contacting fellow profession collegues and he also advised me on surgery.

Yes both doctors who advised on surgery said they should not spare the nerves :-( and they both said that the success rates would be higher with surgery with RT after surgery.

The alternative to surgery was not RT allone as I needed to do Hormone therapy as well.

I will get back after reading the articles.

Paulo

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Paulo,

I have been reading the threads between you and Tim. He does bring up valid points.

I was younger, 45, and I was never given a surgical option. Do think about the incontinence. Best of luck with whatever you decide.

Mark

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I was never proposed treatment with brachy boost therapy!

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You can always say you changed your mind, and you want more time. You can change your mind until the second they anesthetize you. It's your body - they can't force you to do anything.

As for brachytherapy doctors in Portugal - I don't know of any. I do know some in Spain - is it possible to travel there for treatment? One of the best is in Kiel, Germany - do the countries in the EU have cooperative health care arrangements?

The nice thing about brachy boost therapy is that hormone therapy may not add much to its effectiveness:

pcnrv.blogspot.com/2017/12/...

The downside is that irritative urinary side effects are higher compared to radiation without the brachy boost, but incontinence is not a problem and potency is usually preserved. You could have radiation without the brachy boost, but you would have to have long term (2 years) of hormone therapy with it, and you would need a high dose (around 80 Gy). It should only be done with IGRT/IMRT - not with 3D-CRT (which is still prevalent in Europe).

I know I am throwing a lot at you all at once. Please feel free to ask all the questions you want.

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Hi Allen,

In the public health systmem If you have the possiblily to have treatmets in Portugal we can't have them in Spain or any other place in the EU.

Of course if one goes private, my case for now, the health insurance does not cover abroad, so I guess I need to stay here.

Still reading all articles as yesterday was Easter and I didn't have the time quietly to read all documentation through.

Thanks, Paulo

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Hi Allen,

I know now what BBT is and in fact I was not proposed this. There is a guide of the Portuguese Urology Association about Prostate Cancer that refers to BBT as one of the treatment possibilities but they say it is advised for lower risk patients. I know this contradicts the study you sent me in a way, particularly on the Gleason scores, but not on the the characteristics of the patients that very seldon include T3 or extracapsular disease which is most likely my case, as well as I have a higher PSA. Also the second study in the same article says that RP and BBT have similar survival outcomes and this second study was done with much more people. So it is always difficult to compare, unless I have misinterpreted to results.

I have just sent a request to my doctor for discussion about this again.

I know I can decide till the moment of the surgery and because of you I continue reviewing what to do. I thank you for this.

About RT as adjuvant to surgery. I was told that the odds of success were higher. And recently some specialits say there are no increased side effects in comparison to salvage RT side effects. Don't you have these results?

So this is very difficult to decide... and the more we can dig into facts and studies and experiences we may continue being in doubt. I made my choice in 1,5 months but I believe I did plenty of reseach and spoke with 3 doctors + radio therapist + family member who is doctor and made his own inquiries among colleagues. I trust the doctor I decided to assist me and this is what counts for me now I guess.

A member of this forum reported that from the time of the MRI and the surgery the tumor has grown a lot. Are you sure that all cases can wait and decide for longer periods? ... I don't know my particular situation yet unless that it is big.

Paulo

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I think you misunderstood. Brachytherapy (which is given for lower risk patients) is different from brachy BOOST therapy (which is given for higher risk patients). Brachy boost therapy means that the whole pelvic area is treated with external beam radiation and EXTRA brachytherapy is given to the prostate.

While both surgery and brachy boost therapy had similar 10 year overall survival, I hope you expect to live more than 10 years. Brachy boost therapy had much higher PROSTATE CANCER survival, and much higher METASTASIS-free survival vs. surgery. In the studies I showed you, many patients who had surgery also had adjuvant radiation - so that is already included in those figures.

it is not true that ADJUVANT RT has the same side effects as SALVAGE RT. Adjuvant is worse because radiating freshly cut tissue has worse effects than if they are allowed to recover first. But PRIMARY RT has much lower side effects than either adjuvant RT or salvage RT.

But all this is moot if you can't find a doctor who practices brachy boost therapy in Lisbon. Since PRIMARY external beam radiation (at a dose of about 80 Gy) has about the same outcomes as surgery, I cannot imagine what you think the benefit is of having surgery first. If you have IMRT first, even if you have 2 years of hormone therapy with it, you will have a greater chance at potency preservation and continence. Hormone therapy affects libido -- you can still have erections, but you may not desire sex.

All I can tell you about waiting is what the data show for the average man. It is possible, though unlikely, that you have a rare kind of prostate cancer that is growing rapidly.

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Hi Allen,

Please check these 2 articles. Any comment?

radiationtherapynews.com/20...

practiceupdate.com/journals...

I think that these days it is perceived earlier treatment does more good than later treatment. In that sense BBT is an overal early treatment isn't it? While surgery has to have RT as adjuvant tretament...The point of discussion is also the side-effects.

The surgery examples in the 1st study had 43% adjuvant or salvage, but it is not mentioned which case. The second study had comprised 70% of patients.

I am not trying to decrease the merit of BBT, but I am just saying we have to read this carefully. It is true that for me I thought my difficult decision time has gone, but it isn't. :-) It is not bad to be in doubt though. I just hope I don't waste any time.

I am waiting my doctor to call me back.

Thank you for the time you dedicated explaining me things. I realy appreciate this. I will continue to need this and find this support group very helpfull.

Paulo

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Yes, BBT could occur sooner than adjuvant radiation, because you will have to wait at least 3 months for tissues to heal from the surgery before beginning adjuvant radiation.

As for adjuvant vs salvage, there is a clear advantage to adjuvant. In that study, they defined "adjuvant" to mean radiation given while the PSA was below 0.1ng/ml. This is a different definition than what we usually mean by "adjuvant," which is immediately (within 3-6 months) after surgery. I explained their study in the following article:

pcnrv.blogspot.com/2018/01/...

As for side effects from adjuvant vs salvage radiation, in contrast to the article you linked, several studies have shown that waiting longer improved sexual and urinary healing. You can read about those studies here:

pcnrv.blogspot.com/2016/10/...

As discussed there, it may be possible to get some extra time for continence recovery by starting on hormone therapy soon after surgery. Since your neurovascular bundles will not be spared, and you are sure to lose erectile function anyway, starting hormone therapy early will make no difference and may improve the effectiveness of the salvage radiation.

I have no idea why anyone would go into surgery knowing they will have to have radiation afterwards. Even if you can't get BBT where you live, PRIMARY radiation with hormone therapy is equally effective and is much more likely to spare your erectile function and continence.

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Well my doctor told me yesterday that BBT was not an option for me. After an hour thinking it over I didn't feel I have enough encouragement to call that all off and start over with another medical team and research for an improved option.

Honestly now I need to move on. I will count on this group and you to be much more informed of what to do next.

Thank you,

Paulo

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Good luck with your decision. Please feel free to ask questions as you move ahead.

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We look forward to good news after your surgery!

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Best of luck to you. I was given the choice of prostatectomy or radiation and hormones. I ultimately went for the prostatectomy, and 9 months later my incontinence is almost gone, and I am beginning to get my erections back, but this is the most frustrating part. I would I never presume to give anyone advice here because I am not a doctor, my experience is my own and may not apply to you, and everyone must take their own path.

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Paulo, the best of luck with your upcoming surgery. I had surgery in October of 2016 and as much as I wish I did not have to deal with any of this, I have no regrets with surgery. I did my research, spoke with many DR's, analyzed pro's and cons and selected surgery. Sounds like you've done your research and you trust your medical team. No surgery is fun however having experienced PC surgery I was pleasantly surprised,recovery wasn't that bad. Stay positive!

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Thanks, Correct, I am a very meticulous and carefull person in analysing things, but I have also little patience. So, I don't know if 2 aspects go well along together, but yes I though I did research enough, as I thought of the side effects in each case and decided for surgery.

I will keep the mood up :-)

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Hi Paulo:

Are circumstances are very similar. I also was diagnosed at 49, I'm 56 now. Gleason score 3+3 9 out of the 15 cores cancerous. Had a Davinci RPT in 2011 and Proton radiation in 2013. I have to tell you you that I've been lucky despite everything. I can share more information with you if you have any questions. What part of the world are you in? I'm in San Diego Ca. Happy Easter. Talk to you later.

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Hi,

I live in Lisbon - Portugal.

Happy Easter to you too :-)

Contact later. Thank you, Paulo

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Hello Paulo 1968, I have had 72 radiations, 42 in 2004 and 30 more in 2011 when my PSA increased and they found metastases. I started Lupron injections every 3 months with 2 weeks of Casodex. I have not removed my prostate. I has been 7 years and my PSA has been 0.00. However, there are side effects to Lupron, like loosing my ability to have sex as long as I am on this drug. Lupron removes all androgens from the body (including testosterone). Androgens must be present for prostate cells to multiply.

However, remember that each of us have different types of cancer, in different locations in the prostate gland, with different doctors and different insurance companies. Also, I am 72 years old, not 49! Since 2004 new drugs have come on the market and we now have more choices, but check them out before you do something. This a slow growing disease. For example when I started radiation the radiologist actually lied to me to get me to use his machine. I had already decided on radiation, but some doctors are not totally honest. So ask questions if something does not make sense. And we all wish you well.

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Hi Paulo, I was diagnosed 2 1/2 years ago at age 51. PSA 99, Gleason 99 at time of RP. I had 30 lymph nodes removed, 7 were cancerous and positive margins. All in all, not great. The one good thing was no distant mets nor mets to the bones. I also had the Decipher test done and was predicted to be very high chance of mets within 5 years so six months after surgery we followed up with adjuvant radiation. So, my path was similar to what you are expecting. Given my initial diagnosis, I was also put on Lupron immediately and will be on it forever or until a "cure" is found. I'm not holding my breath. But my nadir (lowest PSA after treatment) was 0.04 which isn't bad and my PSA stayed low for about a year on Lupron before it began to rise. I have since added bicalutamide to the Lupron and my PSA is slowly going down, at 0.53 at last reading. I expect that I'll go on the recently approved apalutamide treatment next. Let me know if there are any questions that i can answer for you.

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Thanks cfrees1,

What is Lupron? Sorry I have read this before, but not certain? Is this a hormone therapy? Do you mean that having Lupron you can control PC?

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Yes, Lupron is one of several drugs which lowers your testosterone level to castrate levels. Prostate Cancer is fueled by testosterone so depriving it of it's primary food source is often the first line of treatment for advanced prostate cancer. It comes with side effects which no one likes, like ED and loss of libido, hot flashes, weight gain etc. but it is the most successful thing to prolong life. At some point, Lupron alone stops working for almost all advanced cancer patients, usually around 2 years. Then, there are several additional treatments approved here in the US which also is targeted at lowering PSA and helping to delay disease progression. I'm on the first one, bicalutamide. Recently apalutamide was also approved and there is the expectation that Xtandi (enzalutamide) will also be approved for pre-metastatic but castrate resistant patients like me. Once metastasis is found (lots of new imaging now available too), there are several approved treatments with lots more in the pipeline. The goal for most of us with advanced pc is to keep delaying the disease long enough to take advantage of all of the new treatments. And, if we are lucky, the side effects will be tolerable and we can live nearly normal lives. :)

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Thanks :-)

Hope you are get lucky cfrees1

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Olá Paulo Welcome to our group...good that you have found us and do know that we will be here for you, no matter what your treatment outcome will be. I regret that I endorse Tall_Allen's suggestion that you give yourself more time to make a treatment choice. I say, arrepender , only because I know that you have made a decision to proceed with surgery, and there is strength for you in knowing that decision is made. I am in New York City and I lead a large national prostate cancer focused nonprofit organization. I am also (most likely) the first clinician, in 1997, to describe gay men with prostate cancer as a unique cohort and created the first gay men with prostate cancer support group around that. It is therefore easy for me to suggest that you seek out a second opinion regarding the results of your biopsy. Which means, sending the slides of your biopsy to a second (different) pathologist for a second opinion. I live in NYC and have massive access to healthcare....I do not know if it will be as easy for you, so I don't mean to offer a suggestion which you may find difficult to fulfill. Feeling confident in your Gleason score is a basic first step towards treatment planning....it's unfortunate that one pathologist's opinion is insufficiant to generate that confidence. We're here to help you for the long term, and, with great treatment and learning and support, you've got a long, love filled life ahead of you.

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Olá Darryl,

True I have made a decision and difficult to turn it around. However what Allen has said and you now made me think I shoudl have found these forums earlier :-( I am still waiting my doctor to revert to my call.

This support group is helping me a lot. In Portugal people don't speak out of things. I saw myself speaking with people of 80 years of age that have survived cancer. Very nice fellows, but not living my issue anymore... And anyway just 2 and by phone. Thank you for having had this group :-)

I understand that a second opinion meant then going to have a pathological view on the bipsy, which of course I didn't have unfortunatelly. All second opinions were founded on the exams and reports I made in the same hospital I am having surgery. I don't have doubts about credibility of the hospital and the doctor team I have chosen, but you are right as it is not completely transparent and independent. Well, I have to live with this, I guess, as I am not ready to wait another month or two to be sure what to do! Sorry, but not in my nature. The thing is also all I read and see and aprehend new is never a certainty, always studies and based on different samples...

I will from now on base more on this group to understand what to do next. I will post a few articles on Allen reply. if you could have a look to that too and I would be happy to receive your feedback as well.

You take care,

Paulo

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Paulo, Good luck with Sugery.

I am 50, NYC banker.. had RP in January 2018. My PSA was 8.7 and final Gleason post surgery was 3 + 4. i waited 3 months to have the surgery so I could research my options. I met with some very qualified doctors and it came down to 6 weeks of radiation treatment and then seed implants or RP. Although some may disagree, I concluded that RP was the best choice. Like you, my MRI results showed the cancer was localized. But of course the post surgery pathology analysis will test the lymph nodes and relevant sample tissue to confirm that the cancer has not spread.

Fortunately, my report was good news. For now at least. As we all know, cancer cells are highly unpredictable. RP was a tough choice for me because most people seem to think I am a very attractive , I look much younger than my age, ( most think I am in my early 30s)...so imagine how scared I was to be 50 and about to have my prostate removed...

Well it's been 9 weeks and I am recovering very well. Back to normal workout routine, the incontinence was a pain but now almost completely gone and I am slowly regaining from the ED. I must add that orgasms feel great but it could be because I have always tied sex to my emotions and so I have a very creative imagination. That might hard for some to grasp but anyway... best of luck... you will be fine...Life on earth is not permanent and so I have learned to make the best decisions even if it means a lifestyle change.

Each individual is unique and will know what is right based on the facts, how you feel, and what you expect out of this beautiful life on earth.

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Thank you winwon00 for your email. Already at home recovering from surgery. Best of luck to both of us on the follow up of this ordeal 😀

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Thanks, glad to hear you are back home recovering! it's been 10 weeks for me and I am feeling great. I am back to my normal routine. let me know if there's anything I can share about my recovery that might be helpful to you. 👍

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Hi, for me it has been 2 weeks and 2 days. I am doing fine with my recovery and starting working next Monday. The only thing not so good is that I have leakages sometimes particularly when walking. When did you gain 100% continence. I was perfect for 3 days after catheter removed but starters taking cialis and then the leakages came! Someone here told me this is related. What is your experience?

Thanks for your message and take care,

Paulo

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it's great to hear you're doing well. 🙄

After having the catheter removed I leaked nonstop. But then after 2 days it started to improve and about 2 weeks later I regained about 98% control. I still have a bunch of pads that I don't know what to do with. LoL.

From the start, My Doctor recommended doing the Kegal exercise but I could never find the time to actually do them. I am not sure if you've tried this procedure but I plan to give it a try. For me 2 % incontinence is still a pain to deal with..🙂

I started on Sildenafil about a month after the surgery but there was no noticeable leakage. On another subject, my erections are slowly improving and improve every 3 to 4 weeks. It sorta feels like a process where I am strengthening and training my penis to work. I am not exactly sure what to expect but I can definitely see continuous improvement with erections. one thing I am very excited about is that my orgasms feel just as pleasurable... of course at this time, my activities are solo until I feel ready! Hope some of this is helpful..there's a lot of good info from others on this site that has made my experience easier so happy to share!

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It is good to read your developments :-)

I don't know how much I leak ... maybe 5%. As I am dry always at night and go for peeing about 3 to 4 times during night, this might be my best guess. I agree 2% or 5% is a pain anyway. This frustrates me honestly and not even my partner encouraging words are enough honestly.

I am doing the kegel exercises. You should give a try. I haven't noticed the real benefit of them yet, but hope to start noticing it soon. My doctor also recommended me to hold peeing for a very short while and I am doing it also.

Good that you feel orgasms as before. Unfortunetelly I cannot say that as they are much weaker, but I hear people saying that it will get better or some few say they are even better :-) So hoping for that. I haven't improved much on erections, just felt penis a bit bigger and harder on third and fourth time. I am doing mostly with my partner though and this has been very good to share this with him.

I find the information very valuable here and read almost every post :-)

Thank you for your patiance in writing me and hope for a continuous recovery from your side as well.

Paulo

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Winwin00... Great response , optimistic and when you have lemons you figure out how to make lemonade ... I'm in CT, if you ever want to chat.

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Hey Paolo, I'm Allan. I had the radical robotic prostatectomy 7 years ago and I am cancer free. No other treatment just struggling with the side effects! Was diagnosed at 54 and now my husband and I just celebrated our 31 year anniversary! It's good to be alive. Our lives have certainly changed and they will continue to do so....I've accepted that. Sometimes I feel like I'm living day to day with my mixed up emotions but somehow I keep grounded. Good luck guy, we are all here for you.

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Thank you Koiboi, Glad to hear your story and it gives me strength. I am recovering from my surgery which was Thursday last week. It was of the same type of yours. Hope I will face same luck as you. 😀 tell more later.

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