Acceptance of Prostate Cancer and its side effects

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.

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.

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.

Well said!!