I'm a Gleason 9 4+5 that had cancer wrapped around my seminal vesicles so those had to go. My RP went well but left one margin on the outside of the bladder so I elected to have Truebeam radiation to get what was left. That went well and now I've finished my initial treatment and I need to stay on Lupron, get psa tests monthly and "Go live your life". I'm lucky to be here and I'm feeling better, but I'm also kind of bewildered and uncertain of how to do that. Every month it feels like Russian Roulette. I'm uncertain of what to tell people. Does anyone else in this great group feel that way?
An observation on P/C remission - Advanced Prostate...
An observation on P/C remission
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EricE
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I was initially very open but I've seen so many relationships change. I've even lost some friends I thought were rock solid. I'm thinking maybe I'll cut down on who I tell and when I choose to talk about it. I'm a talker by nature but I need to choose my listeners/audience carefully. Thanks. I'm lucky to be here and I want to make the most of every day, of course.
It’s a mess , let’s face , we’re diminished if we live . Sure most of us feel the same . I’ve been testing tri - monthly for four years . You never get that knot out of your gut beforehand . So I’m walking along , singing in the rain expecting a Mac truck to mow me down at any time . I’m not wishing it . But when it comes , what are we to do? , we can’t run or hide from something that is already inside of us . Live healthy and recover well .
Hirsch in reply to
The testing is gut wrenching. Puts my blood pressure sky high
I think many of my colleagues thought of me differently. But now that I am retired I live in a community where every one has medical issues. Most know of mine and it feels natural.
I have a community like that, the choir I am in. My wife and I are among the youngest members at 55. They keep a kind and gentle eye on us both.
in reply to EricE
A choir boy too? That singing is good for the soul .. 55 were barley old enough to be allowed in ... the new kid . I like it ... I have more in common now with folks in their seventies and eighties than I do with a non pc man my age . I can learn from them .Welcome to the club . I’ve always enjoyed hanging with people my elder . My dad was 35 when I was born so he was an older dad by my time .My hero .. The older people can have more to teach us . I love old people . Can’t tell them shit.. they already know.. Keep on the music .. very good .. 🎼
EricE in reply to
Yes a tenor. I'm pretty much devoted to music and my wife has a music degree. I love talking and listening to older people too. My father was 42 when I was born. Some of the best times I remember were when he occasionally got with other war buddies and they'd talk about the war and I'd sit and listen. I have heros of all ages. Have a good day my friend!
in reply to EricE
I have similar memories of my dad . He liked the old timers and would take me as a lad to visit the old cowboys and hear the western stories of how it used to be . By the way if you have net flix . I recommend “The Ballad of Buster Scrubbs “ Take care .
I lost a 42 year friendship and I'm sore about it. We had an unrelated argument (partly fueled by Lupron) for which I apologized and and he refused my apology. He knew I was on Lupron and preparing for my robotic prostatectomy. I believe he used this petty squabble as justification for bailing on me. I don't think he could handle my diagnosis. I hope I don't pass on before he realizes what an ass he's been. I am very sad about it but I'm moving on. I don't have time to fix him.
to EricE,
42 years?... and the dickhead refused to accept you apology.... If I were you, I wouldn't invite him to your next sex orgy.
Happy Eastern Orthodox Easter.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 04/28/2019 4:18 PM DST
Dear EricE,
I read postings here, but rarely post.
Your concerns are valid and I thought you might like to hear of a slightly different response to the ones posted so far to your two implicit (if not explicit) questions. I'll paraphrase your questions:
1. How does one keep on living (with advanced PCa)?
and
2. What does on tell others about being in that situation?
By way of background, I'm 73, but was diagnosed at 52. I quickly failed both RPP and RT before I was your age. And I've been on a couple of forms of ADT more or less continuously for some 18 years.
As for question #1, I have pushed hard to be physically active. I got to the gym three times a week. I also started studying the psychosocial and psychosexual challenges of ADT. I was a research scientists before getting PCa and was able to redirect my research toward PCa. I went full tilt on this and helped start the Prostate Cancer Supportive Care program that we now have up here in Vancouver, BC where I live. I have coauthored a couple of dozen research papers on prostate cancer in the peer-reviewed the medical literature.
With colleagues in Calgary, AB, I started the ADT Educational Program that now runs nationally in Canada (see: LIFEonADT.com).
And I also helped start the first all PCa-patients dragon boat team based out of False Creek here in Vancouver. This is our 4th year and we were in a regatta just yesterday.
In sum, I didn't hide at all. Rather I got massively involved instead. Admittedly, this is an unusual strategy. But rather than trying to hide from my disease, I made a new career out of it. I recognize that that would not be appealing to most men, but it has worked well for me for two decades.
If there is any part of my situation/strategy that you want to know more about, please feel free to contact me individually.
Since, you live relatively nearby and are still relatively young, I would be happy to talk to you about how to put together a PCa dragon boat team. I know there is dragon boating in Seattle for cancer patients and our PCa team is looking for other PCa teams to compete against. Right now we are the best in the world simply because we are the only PCa dragon boat team in the world.
As for question, number #2, I find no benefit or need to hide my situation. Thus I occasional post personal essays on my response to cancer and cancer treatments. These have appeared in places like the National Post, Globe and Mail, Guardian, Journal of Sex and Martial Therapy, and Journal of Religion and Health. This is all within the framework of what is called "narrative therapy".
Richard W.
Thank you Dr. Google says you are a busy guy! 
I'm excited to look into some of your work. I think I'm on the right course. I don't think my pressured IT career was right for me and I'm on disability right now. It's clear to me that working out daily is now a necessity and I like the feeling of fighting back I get when I am working hard. I'm also focusing on my hobby of choice, the bagpipe. It's coming along and our first parade of the season is in two weeks. I had a ribbon made to fly of my bagpipes. It reads "Bagpipes Kill Cancer" and I believe that they do.
As for the dragon boats, I'll check it out. I'm not sure that will be my path to give back but I will find something related to PC awareness I think.
Again, I'd like to check out your work and I may be in touch. I sure Vancouver is beautiful right now. It is actually beautiful most of the time.
Cheers and I am touched by your reply. Thank you for taking the time,
Eric
I too am 76 and at 69 was diagnosed with Gleason score of 7 (4+3). Had Robotic Surgery with removal of seminal vessels and Radiation Therapy after 2 yrs. with rise in PSA. Am now on Elegard every 3 mo. and Erleda 60mg. daily. I am also reluctant to tell friends but I do rely on a core group from my church for support with prayer.My next Lab work is coming up 5/6/19 to check PSA and testosterone. Hoping that therapies are working to keep PSA at a manageable level.
in reply to Jmoskibike
Heart warming for kind words asking if all could Pray for me. Resounding yes! From all religions; not just the three monotheistic religions..... did my heart good to know that people cared; especially a piece of paper in a wall in the Middle East or in Asia wishing me well. Native American Church and Sun Dance ceremonies.
Anytime, any place. I embraced all good thoughts and only walked away from negativity.
GD
in reply to
🙏
in reply to Jmoskibike
Me too 5/6/19.🙏
Good strategy. None of my family with exception of spouse and child know. I don’t feel the family should be burdened. Separate subject.. is your Rolls still in someone’s garage?
Hey Eric
I’m also a “niner ” with poor prognosis post RP albeit a fortunate one as I’ve lived beyond the statistical prognostications and am still doing well.
I shared my dx with all my family and golfing buddies back when I was dx at age 69 in 2013.
I believe I have had less anxiety than a younger guy like you because I had already lived a reasonably long and happy life when dx. But I have treated it very aggressively ( see profile) so I can’t be accused of leaving anything on the table.
Sharing my dx has had good results in that guys come to me for advice or to report test results.
I’m now on Dr Wassersug’s regimen of using estradiol patches instead of SOC ADT. It’s really improved my QOL.
I work out vigorously and play golf (although poorly due to years of hormone therapies).
Every new day is another experience I enjoy.
All you can do is accept PCa as your new normal and treat it aggressively as a chronic condition. Before you know it you’ll be in your 70’s and be happy to have lived a long life.
Bob
Great advice.
Happy Eastern Orthodox Easter.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 04/28/2019 4:20 PM DST
in reply to Break60
👏
Thank you Bob. I think I'm on the right track in terms of adjusting to the new normal. I've been so driven during treatment that now that it's over it feels very much like a kind of limbo. I'm sure as I get farther away from treatment (knock wood) I'll find my stride. In many ways, I am healthier than before the cancer. I'm working out every day and I'm really enjoying the time I have. I've got a good partner in my dog and we go on many adventures together. My wife and I love each other deeply. You are right, life is good. I'll buy you a drink on my 70th birthday. Thank for the kind words.
I didn't hold back. Family friends and coworkers all know. Some will talk about it and some won't. I've been lucky enough to not only keep working but to have a boss who is very understanding of me taking time for appointments. I'm not concerned who knows or what they think. I'm open with anyone
"who shives a git" That's my thoughts exactly....✔
Happy Eastern Orthodox Easter.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 04/28/2019 4:21 PM DST
in reply to michael00
Me either ... great attitude ..
The one other photo
I told my ex-wife about the two cancers that I'm fighting....She just laughed her ass off.
Happy Eastern Orthodox Easter.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 04/28/2019 4:14 PM DST
This is a difficult one. My husband has elected not to tell any of his friends, so only his family knows. We were living in England at the time of diagnosis. He is English so I put this in the bucket of him being English and private. He was relatively young at diagnosis, 53, and works in an industry that is relatively small and was concerned this would affect his work. But also didn't want pity.
in reply to HOPEFULSPOUSE
Each to their own principles ...
I found comfort in letting my friends know initially and it has helped overall. It lifted a weight off of my shoulders. I also felt I had to tell people because the Lupron makes me suffer wide mood swings. I told everyone at my worked. They felt nothing but compassion. The other good thing about letting everyone know is that you are now in an exclusive club with all other cancer patients. He'll find many comrades this way. But the cost of telling everyone is that some people simply can't handle it. They want to know how you are but they don't want to hear the answer so they pull away. While he may lose some friends, he will find other, stronger friends. Maybe I just answered my own post. Good luck you and your husband. He'll find his own path and it will be the right one for him. Praying
Wow. Serious collection
With openness, an advantage is that you find out who your friends really are and what they really are. It's always better, imo, to know. In my case, it has been wonderful. I haven't lost any friends and I have connected with many former friends and associates.
in reply to jholmq
True, Reconnections can some times be better than currant ones . I haven’t lost any true friends . If lost because of illness they were never friends from the start .. we find out who “ We “ are in this process ..
EricE in reply to
Indeed. I try to remember that my friends behavior sucks, but he is a product of his parents and he makes no more mistakes than I do. I'm in the process of forgiving him for my sake. He may iron out his feelings some day. I hope so.
in reply to EricE
My problematic bachelors friends are blowing in the wind. Se la ve
I have opened anytime it was possible without any restrictions and responded to many questions. I have not lost friends, on the contrary, my opening on the subject has bring people closer that have never before admitted they were suffering the decease! Imagine my surprise.
As for living with it, there’s not so much difference. Prior to I was not aware of the billions of cells in my body and whichever divide properly or not. I still don’t want to maintain that level of micromanaging in my life. I’m not a statistic either, nor part of any medical research paper cohort. I mean each person is unique and it might be the time to get back to the foundation of your life. What do you want to achieve, are you heading in that direction and so on.
Every body is carrying a ticking bomb inside, but the human nature is not to think of it and open the tv or do whatever else to “not think”. I appreciate the value of the everyday appreciation I get from life from that ‘event’ and others I had the chance to have.
Find your way, good luck !
in reply to Northcaptain
Great thinking ...
Amen brother. Thanks for the wisdom.
You mean it's not contagious? Wow! So now I can kiss my wife again....
Happy Eastern Orthodox Easter.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 04/28/2019 4:14 PM DST
not contagious, but the kiss may be up to her..
look most people don't care about your gleason score u were dx they want to know what treatments u havre have so far then they can give u a better idea what they have had to fight this disease that has no cure
You got lots of responses with many different points of view. Mine:
1. I started a support group to discuss these very same issues.
2. My life is really full and I am keeping it that way.
3. People do sometimes look at you differently and when they ask "How are You?" or say "You are looking good" I have to ask internally "do you mean for a guy with cancer?".
4. For me, the best reliever of tension and doubt are to help other people. So that is what I do.
I’m 12 years into my journey; diagnosed at 51 in 2007; Gleason 9; Open Radical Prostatectomy Oct 2007; Radiation 2010; Intermittent ADT until 2014, when I entered a clinical trial; been on continuous Eligard 3 mo & bicalutamide daily since then (4.5 years so far). I’m very open about my health and what has happened; when you’re diagnosed as early as I was, much changes in your life. Thankfully I have a wife who is an RN and is extremely understanding of the entire situation; it would have been horrible to me to have not had her help & support. I’m pretty vocal about the situation because I know a lot of people with the disease; when I was diagnosed they came out of the woodwork and I was stunned by the number actually! I’ve lost 4 of them so far along the journey, and it’s not a fraternity I would have opted to join, but I’m really glad to have the knowledge that they’re there to share in the good and the bad.
In Central Ohio we are blessed to have two large support groups for PCa, one at Ohio State and one in Lancaster, Ohio affiliated with Fairfield Medical Center. Both are quite helpful in keeping participants informed about new therapies, having social events together, and creating camaraderie amongst the group, and I do think it’s very helpful to those who attend.
Do I wish I wasn’t fatigued? Do I wish I could do things I used to do? Certainly! However, I saw the monographs when I was first diagnosed, and didn’t know if I’d live 5 years...I was frightened! But now, I’m just resolved to having a chronic illness, and I follow along with my treatment protocols...I’m happy to be alive, and I need to up my exercise (look at what others here are saying), and just keep on keeping on. My PSA is stable at the moment at 0.44, and if I ever get up to a 2, we will move to Provenge (since Insurance protocols won’t let it be administered earlier - a sad statement as far as I’m concerned, because if it truly works, getting it earlier would be better), but meanwhile I proceed with the status quo.
At diagnosis for me, you basically had ADT, then Keto, then Chemo, and that was it! Now we have a myriad of treatments available, and it’s all come to fruition in these past 12 years...I honestly feel if you’re going to have to deal with this disease, it’s a good time in medicine to have contracted it - our life expectancies are much higher than they were for those who preceded us - and research is moving at an incredible pace towards control and maybe even a cure - so hang in there - you’ll find everyone’s different, but we’re all here to help you through your journey...
in reply to tdouds
Thank you for that post.. very positive for me and others that are trailing . I’m 4 yrs in and on cruise control for now ...Peace and continued success to you and your wife getting you through it all . Take care ..
The Midas touch Nal .. one of only three ,how long did you have it before selling ? you done good , fascinating car and history . 🎩
That's great. I love the BMW but could never afford one. I ride a VFR750f when I can. I'll take a look at your site. Thanks.
Friends all know as do my acquaintances with whom I do Hiking Trail work ( preparing them in advance for my diminishment in performance should I elect to go the ADT route soon)... Not averse to people knowing....even strangers if it comes up as a topic of conversation for any reason..... Would bargain that your friend of 42 yrs had other issues with the friendship festering and looking for an outlet..... I'm communicative by nature but probably tell more than is prudent.... I'd be a bit more close to the vest,admittedly, if I were not retired and had something to potentially lose : )
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