I'm a 68 yo gay male, partnered for 37 years and last December was diagnosed with metastasized prostate cancer by MRI guided biopsy. I had a very enlarged prostate (known for a number of years) with predominantly Gleason 9 (4+5) and a 68.3 PSA at the time I began Lupron injections and daily bicalutamide meds. Luckily my partner and I had a planned month long vacation in February (OK'd by my docs) and when I got back in March I had 1.95 PSA and testosterone at 33 ng/dL and Xgeva injections were added to my regimen. I went to the Mayo Clinic for a 2nd opinion about receiving chemo, was reassured and began Docetaxel infusions over a week ago, every 3 weeks for 18 weeks.
I have been open to everyone about my diagnosis and treatment. This is where I am in my life now and It helps me to talk about it. I've gotten a lot of support from friends, family, neighbors and colleges. The most difficult part other then shit side effects from chemo, is how it has affected my partner. We have become closer, but he's suffering a bit in silence. I'm trying to get him to talk it out with our friends (some who have survived cancer), but he's not as open as I am with his feelings. I hope I can find some counseling or support group to help open him up. In many ways it's been easier for me because I'm at peace with what each day brings and glad I'll have many more.
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DT2311
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u realize males who have no cancer in their prostrate run from 0-4.0 as for your gleason means shit to most of us,because that means u haven't started cancer treatment. u read most of the articles here have no gleason readings who fight cancer. i'm on my 11 year.
gay means no shit to your problem so u don't have to mention it as will
Damn, that was a great first response for me to read. I won't respond in kind or educate you on prostate cancer issues unique to gay/bi men. I have better things to do than rip on someone who's not worth it.
Some people find it difficult to deal with serious illnesses. I found that to be the case with me. Eventually most got over it. But when you are close it's even harder.
I'm fortunate to be treated at Seattle Cancer Care Alliance. My husband is always welcomed at clinic visits as an important part of the team. I hope your partner/husband can find a support group.
From a spouses point of view, it will take some time for him to come to terms with your diagnosis. The first 6 months were very hard as spouses/partners start the grieving process and start to envision how everything - and I do mean everything - is going to change. He needs time to come to grips with what's happening and what might happen and what can happen. He also has the additional weight of thinking - what happens to me if I'm diagnosed with this PC? In my opinion, he has to adjust to a double whammy.
For me I've found solace in FB groups where I can help others with my knowledge but that first year - Yikes!
Welcome to the forum. If you've been reading it for a while before joining, you probably have noticed that we have all of the personalities and people in this cyberspace that you experience in person.
I was on the other side of the cancer equation a few years ago when my wife was diagnosed with breast cancer -- 'only' stage 2 and not stage 4. Even with that, I was terrified that I would lose her and didn't want to burden her with knowing my feelings on top of everything that she was going through with treatments (mastectomy, chemo, radiation), so I did the supportive role and kept mostly quiet about my feelings of fear. Perhaps your partner is doing this. We did have a few cries in each others arms, but she did not pry and I did not offer discussion about my fears and her fears about mortality -- we knew without voicing it. She jokingly said at one point that her breast cancer was just evening out our life expectancies -- I am 11 years older than her. Last year after I was diagnosed with prostate cancer, I jokingly apologized to her about screwing up what she had done. My eyes were watering a bit by the end of the sentence and we had a good hug. Perhaps looking at some non-verbal queues could help ease your mind. As long as he's not ignoring the situation completely. In the 37 years since you have known each other, maybe looking at the way you've dealt with any other deaths in your families could help make sense.
Thanks for sharing your story with me farmanerd. My partner isn't ignoring this at all. It's just difficult for him to talk to other people that have offered support, but he'll change and be more open in time.
I think sometimes our partners have it rougher than we do. At least we're in the front lines and facing the enemy. Being in a support position where you're watching has got to be tough.
But I also feel strongly that we need to give our supporters as much support as they give us.
I believe you're right, Steg. I've been on the supporting end of my partner's health issues and many friend's battles with HIV, so I know the powerless feelings he has.
I survived PCa and I am Gay as a goose. I started my treatments in 2007 with 42 radiations. I was told I may only survive 5 years. I'm still here. My Gleason score was 3 + 4 = 7 and my PSA was 72. So my PSA went down to below 1.0 for 4 years, then it went back up again. Now I had stage 4 bone cancer with metastases. So I had 30 more radiations and started Lupron (Eligard - generic) a shot every 3 months. I can tell you more details, but the side effects were hard to live with. I stayed on Eligard for 6 1/2 years and my Doctor took me off of all therapy April of last year. So far all is well with no cancer in my body.
I am 73 years old now. I can get an erection and have an orgasm (dry). I found an MCC church here in Orlando and use it for support feelings of love and acceptance. My lover died of kidney cancer so you should cherish your lover. I have learned that intimacy is not always about "plugging in". I also go to 12 step meetings, have a sponcer, and deal with my feelings appropriately. I use Health Unlocked Prostate Cancer Gay Men for advise. As we get older we get diseases, it is part of life. I now have heart, diabetes, and kidney diseases. My feelings for life and having fun have not changed. I no longer use drugs or alcohol but that was my decision. Some of us hide our feelings and we are all different, but what keeps us together is our ability to communicate with each other. The model that I used with my lover was to talk about our physical, financial, spiritual, emotional, and intellectual programs and to do the best we can, not be perfect. Find subjects that you both know about and then talk about. Learn about what your lover is interested in. Some things you read about on the website may not be true, so do not think this is the "gospel" truth. Ask your Doctor about vitamins, diet and exercise. Read all of your labs, you may have a deficiency in something and it can help you see the problem and correct it. Above everything else remember to just keep truckin'.
I realize you might possibly no longer be on board here but man, what an awesome letter. I second what DT2311 said. As for the 1964 guy, he lives in his own world so we need not sweat it. I’ve had much the same response before as well. Meanwhile I keep hope and send as much allowed. Please be well one and all.
Thank you very much, Jim. It's too bad that the first response I read was from charlesmeyers1964 and not yours. I truly appreciate your openness and advice. I was linked to this site by another group I'm in and am glad to see other gay men here. I will use the HealthUnlocked Prostate Cancer Gay Men now.
welp welcome to the site that no one wants to be on ( if you ever come back y aahay a aay a ). lots of great knowledge here and great guys that are right there sailing in the same boat you are. their wealth of information will be very beneficial to you. everyone here is soaked in nasty chemical treatments ( never mind the elephant in the room ) and it can make more than a few of us a little grouchy ( men in black ) .... Depending on how your are doing externally and where your head is at, I find projecting a highly upbeat attitude is the best medicine for the ailing hearts of our family members. I like to say that this crap isn't just about us ... it's about everyone around us that loves us as well. my wife needs me to help her through this just as your life partner will / does too. helping them helps us a lot. it's easier to see a brighter scene when there is less negativity and sorrow in it. . it's funny how all that works. go spend some quality time with your closest people and your better half while you are in shape to to it .... it's good medicine ( socializing ) for everyone all around. nice to see you here. well ............ not so much but you know what I mean ya haya ah ay ayhahaha .
just to be clear about when I said sick people soaked with awful drugs can be grouchy I was trying to kinda smooth over the disrespectful part of charlesmeyers1964 post. especially to you a new guy that needs us. there is just no excuse for that ( CM1964 ), I just didn't want you to think you aren't welcome here, of course you are. I thought your measured response to charlesmeyers1964 was great ... probably no one would have blamed you for going nuclear on him if you wanted. and .... just in case .... when I said " nice to see you here " , then " not so much " .... I meant it's sad to have to see any of us here, but never the less ... " nice to see you here !!!! " ..... dunno if I needed to say this but it's easy to interpret things in many ways and I'm probably not the best about being exactly clear about stuff as well . I think I'm kinda naive ... I expect that people will always see the positive up side of things and people ... just doesn't seem to always work out that way in real life and , some times, that flies right over my head.
I think your good intentions and kind words came through very clearly, Kaliber. I always look and hope for the best in people. Of course there are times I'm disappointed or angered by careless and rude people, but I try to take a deep breath and let my head clear. Most people are good, like you and many others who replied to me here, so I'll keep my focus on those people.
Pretty much everyone here has the same elephant in the room and is fighting the same battle to stay alive a little while longer. That by itself makes us all brothers. We all have enough going on without veering off sideways into bs. love and positive thoughts from me brother. ( insert group huh here ) .
Usually I delete the homophobic remarks but this one illustrates the harm that ignorance and bigotry causes. Unless dt2311 or others object, I will leave this here as a reminder that prostate cancer doesn’t change people, it just kills us.
Thanks, Darryl. I certainly don't object and appreciate that you left it. I paused for a few minutes before responding and I'm glad I did. Thanks for being here!
It's nice that you're concerned how your partner is reacting to your Pca. Don't fret because there are many people who bury their heads in the sand. That's a normal reaction and I must admit that I've got lots of sand in my ears. Just give him a break cause it's hard on him too. Don't let Pca take away you life... live and laugh..... 37 years? Holy chit....
BTW where are you located and being treated? That info is voluntary but it help us help you and helps us too. If you respond do it in a future post and not to me, cause I can't see anything (sand in my eyes).
I'm in Minneapolis and being treated at University of Minnesota Health Masonic Cancer Clinic. I'm glad I'm there because in our state it's probably 2nd to the Mayo in Rochester, MN. I'm staying happy and active. You guys sure are a help though!
I've been very open with friends and family, I found I could deal with this better but not everyone is the same and can be as open. I think Forums like this are a life saver, people who find it hard to talk to family can let it out here and get moral support.
My biggest issue was my Sons 11 and youngest is 9 (he will be 10 in 3 days) we decided not to tell them, they obviously knew I'm ill as no hiding the pain and hospital visits. My youngest asked me today if I was going to die, I could see he was very stressed and worried so I decided it was best to be open with them, I explain what's wrong with me, important thing was telling them Doctor is happy with my treatment and I'm improving. I promised if doc thinks I'm not improving I would tell them. It was hard to do, you want to protect them but I don't want to lie to them either. The eldest is quite mature for his age and took it in his stride and the younger Son seems more relaxed now.
That had to be tough letting your kids in on your prognosis. I'm glad that they're accepting it and I'm certain it reinforces their trust in you. Good luck!
Welcome to the forum! It is not something I like to do, welcome people here, because no one here really wants to be here. It sounds like you have a great treatment plan. It was harder for my family early on in my diagnosis than for me, but now I find it is the opposite. I am thankful for them every day because I don’t think I could do this with out them. Anyway, you’re most welcome here. There are MANY knowledgeable posters and we are all brothers on this forum. God bless.
Thanks, Sherpa and sorry that it's gotten harder for you. I'm glad to be here and find such great welcomes such as yours. I look forward to learning more and if possible, giving support to others, too.
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