Acceptance of Prostate Cancer and its side effects

Posted by retireddoc @retireddoc, Mar 23 10:37am

These discussions are mostly devoted to the nuts and bolts of prostate cancer diagnosis and treatment, and rightly so. Those discussions are immensely helpful to men understanding their disease and seeking the correct treatments.

I would like to reflect for a moment on how my almost 3 year journey with this disease and treatment has affected me and how I am trying to find acceptance.

I was diagnosed with Gleason 9 prostate cancer August 2021. No evidence of spread outside the prostate on Imaging. Underwent a RP in October 2021. PSA went up 6 months post op and on PSMA PET a solitary T8 met was discovered (now stage 4). Sought consultation at a COE and had SBRT to T8 with good result. Four months later PSA revealed rapid doubling time. Another PSMA PET showed positive node in pelvis with no activity at T8. Additional research on my part and ended up at Johns Hopkins under the care of Dr. Pienta/Diane Reyes. Had triplet therapy with Docetaxel, Lupron and Darolutamide in late 2022. PSA rapidly undetectable Testosterone < 3. Additional radiation to whole pelvis in spring of 2023. Taken off Lupron after one year and currently on no meds. Testosterone up to 31 last week.

After my surgery I had complete ED, unresponsive to any meds. Used vacuum device with rings but pretty unsatisfactory. Used Trimix which worked great but had urine leakage during sex with climaturia. Followed a stringent pre and post op PT pelvic floor program and now just have stress incontinence with occasional unexplained "squirts".

I heard previously that the prostate treatment was almost as bad as the disease. I concur. I had a very active and satisfying sex life which is now in shambles. My incontinence, which had gotten better the year after my RP, has worsened after the pelvic radiation. Also, the usual side effects of the ADT which have yet to abate 9 months after my last 3 month injection. And to add insult to injury, I have had penile shrinkage.

I am glad to be alive with a currently undetectable PSA (for the time being), but my life has been significantly altered in addition to the diagnosis of a likely terminal disease. I have been coping as best I can with therapy, exercise, gym and golf. But it has been difficult. I am part way down the path of acceptance, but I'm not quite there yet.

This site, and other forums, have been helpful to me to hear the stories of other men struggling with this disease and what they are doing to make their like better.

Thanks, prayers and good luck to all.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Thanks you for this post. I’m meeting with a Dr at MD Anderson in 2 weeks to help me pick out of treatment. I’m Gleason 7 with 1 as a 4+3 so I do need to treat. But the suggested IMRT x 28 and the hormone therapy has me concerned also about quality of life. I’m especially wary of the hormone therapy - mood swings and other side effects. I also so far have rejected surgery due to incontinence risks. The quality of life vs quantity is not talked about much. Best wishes.


You are now in my prayers.


Diagnosed 3 years ago May 2021 with PSA 1429, Gleason 8(4+4), mets in pelvic lymph nodes. Urologist immediately put me on hormone therapy of Eligard. Once into the local Oncology Department they immediately started pushing (real hard) abiraterone and chemo as they are the triplet part on today's SOC. After researching the side effects of these two treatments, I declined their use. I have now been on the ADT monotherapy for almost three years. Have just started adding into the treatment Bicalutimide with the intent of dropping the Eligard treatment after the next shot. I have hated the side effects of Eligard and cannot wait to be rid of it, I have no intent of going back on it, no matter the situation. But I must say it has worked well, cancer wise, as my PSA has been at .04 and my total testosterone level has been around 10 almost the entire time. My side effects are comparable to most already expressed here. I am not advocating this avenue of treatment, only telling what I decided to do and my personal results. One good thing, I guess, about this disease is we have many choices on how to attack it and we command the ship.


Hang in there some of this forum know my journey, still I attach my chart.

I will never forget the phone call from my urologist saying the biopsy was positive for PCa nor his haunting words, "Kevin, that's a pretty aggressive cancer...!"

My clinical history bears him out, yet, it had never become resistant, spread to to the bones or organs..why, I don't know. I have stayed on top of it, always monitoring, had decision criteria to gop on treatment informed by clinical data, generally taken an aggressive approach.

I've done a lot in these ten years as I've said, vacations, birthdays, holidays, anniversaries (up to to 34 now) daughters graduations from high school and college (no weddings or grandkids yet), dinner parties with friends, watched my Royals, Jayhawks and Chief experience the highest level of success in their sports...went to a Willie Nelson concert and travelled to Las Vegas to watch my daughter play in her Mountain West basketball tournament, have gone skiing in Colorado while on ADT you get the idea.

How have I adapted. Well, some ways are downright funny.

My daughter came home for Christmas while I was on Lupron. She asked to borrow my car to meet up with a friend and catch up. She came home and asked why I had the air conditioner on in December...!

My wife and friends no longer ask why I am out on the deck when it's bitter cold, they know it's soothing when there's a roiling hot flash.

At the gym, friends wanted to swim in the heated pool, me, nope, the lap pool is not heated and is great.

A colleague and I were travelling together, I had the air conditioner on fairly high, he reached to turn it down, I said, don't touch that, I'll kill you (kidding!").

A friend and I were driving to a Jayhawk basketball game, it was fairly cold, he asked why I didn't have the heater on. He took a picture of the dashboard showing he outside temperature a zero..

I don't wear sweaters because they can trigger hot flashes and I need something I can take off quickly, so everything has to be zippers.

As I type this response, I am drinking my coffee and a hot flash is taking place. I know, coffee and alcohol, but I like both and I don't always get a hot flash when enjoying a Manhattan, so..

Three years out of the 10 is when I've been on treatment. I tend to listen to my body, nap when I want to.

I'm active, perhaps that helps as a mitigating strategy.

I view this as a chronic disease so far, manageable, with the goal of dying of something else, my medical team knows that's their mission. I am fortunate to be able to do so since it's never become resistant nor spread to bone or organs, a whole different ballgame.

So, yes, I've "accepted" it and the SEs, that's not to say I'm excited about it. If medical researchers come up with a cure, I'm all in! Until then, I'm living!


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Awesome! Great story and quite inspirational. I hope I can stay as positive as you. Thanks for sharing your journey. Best of luck to you.


I was diagnosed in October 2020 had my Da Vinci robotic prostatectomy. I was Gleason 7(3+4). After the surgery I was on bicalutamide until in February 2021 I had bacterial endocarditis. Antibiotics didn’t work and subsequently I had open heart surgery to replace my aortic valve. It was a bad time during the prime Covid ‘plague’. I was stuck in the hospital for over a month in bed. I had sarcopenia and badly swollen legs and feet. Upon discharge I had to walk wearing only my socks in the snow to get to our car. My footwear wouldn’t fit. It took months before I could go for short walks wearing my shoes. My medications were now Digaralix and Erleada. I had to inject myself with one and took 4 tablets of 60 mg Erleada. The side effects of these ADT meds were too numerous to mention but I soldered on knowing that the alternative was my demise. Fast forward 2 years and I’m on Calcium and Vitamin D3. I got bone density and bone scans and I was told I was in good shape. While in Florida my wife noticed a dead opossum that was in an advanced state of decay. I tried to dispose of it and injured my back. I went to 3 different emergency doctors and they thought it was a skeletal or muscular injury. I got cortisone and anti inflammatory injections. I was given dilaudid and OxyContinThis didn’t help my pain was still 10 out of 10. The only relief was laying on my back in bed. This went on for a month. Finally my wife could take no more and called an ambulance. I was taken to a hospital and had an MRI. Finally I got a diagnosis. I was suffering from compression fractures in 3 vertebrae. My insurance would not cover surgery as ‘this could heal naturally after 3-4 months’. I decided to go privately and get a neurosurgeon to do a Kyphoplasty. The next day I was almost pain free except at the surgical site. I’m sure this accident was caused directly or indirectly to ADT. Life goes on this is my story. I won’t get into the side effects but maybe that’s for another time. Presently I’m on 120mg Erleda’s and Lupron injections every 3 months. Life is not easy but better than the alternative.


Eventually Acceptance Happened. 3.4 Years on this journey. Year one was a horrible battle. 67 Years old and I wanted out. Gleason 8, PSA 118. First 6 months I was in a rented Hospital Bed, couldn't sit in chair, back lower pain was a 10 out or 10. Fatigued from pain meds, Radiation Treatments, and Chemo. I was a mess. Emotionally Drained, I had no fight in me.

ADT Started in month 8 and have been on it ever since. Then I got Converted. Converted to loving life. How? Buddies. Advanced Prostate Cancer Buddies. There's a bunch of us out there. We've been through it and are still here to talk about it. They're here at Mayo Connect, at my Fitness Club, my Writing Group, 2 Neighbors, and my Treatment Center Support Group. We are everywhere. I love our stories. Through our stories I have gained acceptance. I really appreciate your post/story retireddoc.

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We are here to support each other! Keep your head up!


Thank you for starting this discussion thread.
I really do not know how to describe what I am thinking.
My parents both lived to 95, and I always joked that I was counting on my genes.
My only comorbidity is excess weight. I had lost 20 lbs, with another 20 - 30 to go, when I crashed into PCa, RP and salvage treatment.
Eat pretty healthy and exercise regularly, but it took a good amount of time and effort in my early 70s to lose weight and now have added back 8 lbs.
So I had a relaxed sense of mortality.
How about now, after 2 rounds of treatment for Gleason 9 w/EPE?
Probably more conscious now of time; not that I feel compelled to do a lot of things. Just aware that I am spending my "capital ", w/out knowing how much I have to spend.
Has not really changed my outlook, but I know that PCa has changed my life significantly.
Do I have 20 years of healthy life? Probably not.
Do I have 5 yrs before another recurrence? Questionable, but hopeful.
Will I have a "period of quiet" measurable in years after my 2 rounds of treatment? Hope and pray yes, but really don't know.
What actions, if any, should I take to maximize my enjoyment of life now? Still trying to figure it out.
I have been thinking about finding a counselor because I have had unusual for me feelings. Loss?; depression?; I don't really know.
And I am generally happy and do feel well.
To return to the beginning, I really don't know what I am thinking or feeling. And I have been thinking and feeling differently, and am trying to understand.


>>>I have been thinking about finding a counselor because I have had unusual for me feelings. Loss?; depression?; I don't really know.<


As we all know, side effects suck. I've had chemo, hormone, some bone strengthening injection, taking Abiraterone and prednisone. Not really by choice but my focus ends up on the side effects, not why I have to take the meds. I've never been good at handling the heavy stuff. For me it's easier to focus somewhere else. I have wonderful wife of almost 48 years and a great Oncologist. I let them handle the heavy stuff. I work at a rehab center doing maintenance work. I'm surrounded by caring coworkers. My focus tends to be what repairs I need to make. It keeps me happy, if I was to dwell too much on my problem I would be in trouble. This didn't really stop me from doing anything, I'm a home body anyway, of course I get fatigued but who knows, maybe it's partly from my age. I remind myself,, my body gets worn down but my mindset is going good. I hope all the best for everybody.


I think your comments are the true feelings we all have. Most of us - myself included - post what we hope are inspirational messages to our fellow sufferers, and we often make light of how we really feel.
But you say it like it is: our lives - as we knew them - have been ruined. ED, incontinence, constant anxiety, feminization of our sex organs and all the rest is a big , BIG change from what we’ve known and how we view ourselves.
When I bitch to my wife about these things she says , “Yes, but you’re alive!” Which is true but is it “living” the way I want to? I don’t want to look in the mirror and see someone else, feel like someone else. I want to be the old ME!
But what keeps me grounded and stops me from throwing myself a pity party is seeing all my friends who have it much worse; debilitating strokes not allowing them to swallow or eat, others stricken with ALS, heart attacks that killed others at a very young age, and friends who have lost THEIR 30 yr old children to cancer….and I should complain??
In short, life CAN suck!! And we all know the endgame can’t be much better but you gotta keep going, laugh at whatever you can and ****k the rest!!!

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Well said!!

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