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.

@stevemaggart

Doc, we've recently communicated on another post. I read this post with great interest as there was a bit more information about your case. As I read this post I was reminded of the old B&W show, Dragnet - "the stories are true, only the names have changed ..." It was like reading my own story.

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And I hope we have the same outcome-cure or long term remission of a controllable, chronic condition.

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I can relate to everything you said. I had radiation and ADT and it's "finished" with, at this point, only mild side effects still lingering, but I do still get periodic panic attacks reading about all the terrible things that are going to happen in 2-5 years (permanent untreatable ED, incontinence, bleeding from bladder and rectum, other cancers, etc.) and sometimes feel, 8 months out, that I'm just waiting for the "other shoe to drop."

That said, though, at this point I'm having more good days than bad and more good thoughts than bad so things are improving. While I was on ADT I was unsure how many of my bad feelings were from the drug and how many were "real" and now that I'm taking an antidepressant to help feel more normal I'm wondering the same thing, i.e. when I'm feeling happy am I actually happy or is it just an artificial happiness caused by the medication?

I never got to have a traditional midlife crisis where I slept around with people half my age and bought an expensive new car so getting a PC diagnosis was mortality slapping me in the face when I'd been kind of smug about being in good physical shape and eating healthy, thinking those things would protect me (hah!). At times, I do envy people who are spiritual because I think that provides a kind of strength I will never have (pretending to be spiritual doesn't do anything for me).

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@scottbeammeup

I can relate to everything you said. I had radiation and ADT and it's "finished" with, at this point, only mild side effects still lingering, but I do still get periodic panic attacks reading about all the terrible things that are going to happen in 2-5 years (permanent untreatable ED, incontinence, bleeding from bladder and rectum, other cancers, etc.) and sometimes feel, 8 months out, that I'm just waiting for the "other shoe to drop."

That said, though, at this point I'm having more good days than bad and more good thoughts than bad so things are improving. While I was on ADT I was unsure how many of my bad feelings were from the drug and how many were "real" and now that I'm taking an antidepressant to help feel more normal I'm wondering the same thing, i.e. when I'm feeling happy am I actually happy or is it just an artificial happiness caused by the medication?

I never got to have a traditional midlife crisis where I slept around with people half my age and bought an expensive new car so getting a PC diagnosis was mortality slapping me in the face when I'd been kind of smug about being in good physical shape and eating healthy, thinking those things would protect me (hah!). At times, I do envy people who are spiritual because I think that provides a kind of strength I will never have (pretending to be spiritual doesn't do anything for me).

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Totally agree with everything you say, Scott. I was another believer that my healthy lifestyle and exercise regimen would protect me from the Big C….what a joke, huh?
I now eat Kraft American cheese on my burgers instead of the artisanal, organic cheddar from the farm near me for $25/ lb!!
It melts and tastes way better and all the artificial ingredients and dyes may actually be why my PSA is lower - and NOT the ADT and radiation🤣!
And being a very lapsed Catholic and altar boy, I am anti-spirituality to the max. But I too envy those lucky souls who truly find peace and comfort in the spiritual realm.
Whenever people say they are praying for me I say “please don’t!” But follow it with a chuckle or a joke because I don’t want to offend them and their beliefs…but like you, I cannot pretend to be on their spiritual level.
I have, however, come to a level of acceptance that does bring me peace. My mantra is YOU GET WHAT YOU GET in life snd then you just have to deal with it. So many of the guys on this forum have such advanced or aggressive disease, yet their courage and perseverance gets them through the most horrible treatments imaginable! THEY are my spirituality, THEY are my strength and THEY are the ones who guide me through this very twisted and unpredictable journey. Best to you!!

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@heavyphil

Totally agree with everything you say, Scott. I was another believer that my healthy lifestyle and exercise regimen would protect me from the Big C….what a joke, huh?
I now eat Kraft American cheese on my burgers instead of the artisanal, organic cheddar from the farm near me for $25/ lb!!
It melts and tastes way better and all the artificial ingredients and dyes may actually be why my PSA is lower - and NOT the ADT and radiation🤣!
And being a very lapsed Catholic and altar boy, I am anti-spirituality to the max. But I too envy those lucky souls who truly find peace and comfort in the spiritual realm.
Whenever people say they are praying for me I say “please don’t!” But follow it with a chuckle or a joke because I don’t want to offend them and their beliefs…but like you, I cannot pretend to be on their spiritual level.
I have, however, come to a level of acceptance that does bring me peace. My mantra is YOU GET WHAT YOU GET in life snd then you just have to deal with it. So many of the guys on this forum have such advanced or aggressive disease, yet their courage and perseverance gets them through the most horrible treatments imaginable! THEY are my spirituality, THEY are my strength and THEY are the ones who guide me through this very twisted and unpredictable journey. Best to you!!

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Indeed. I had eight years of Catholic school. When I would ask "why?" in response to nuns telling us some thing or other that we weren't supposed to do. The answer was always just "because God said so" followed by a slap across the face. Kind of turned me off to the whole thing. It wasn't all bad, though. I had a great teacher in 5th grade who got me into science fiction reading Ray Bradbury and Arthur C Clark and of course watching Star Trek.

As for cheese, I got spoiled when I was in London so still pay the outrageous prices. I LOVE a slice of Apricot Stilton with a fresh pear for dessert. But you're right about burgers. A piece of crappy Kraft Muenster is good enough.

As I said in another post, a friend said to me "the pain of accepting the changes you're going through is 10x less than the pain you're going through trying to stay the same." That was really the kick in the pants I needed to hear that set me down a decent path mental health wise.

ADT really did a number on my mental health, but I got some help for that and now, a month out, I'm feeling a lot better so have started corresponding with others who are just starting on this "journey" and hopefully can help some of them out

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@scottbeammeup

Indeed. I had eight years of Catholic school. When I would ask "why?" in response to nuns telling us some thing or other that we weren't supposed to do. The answer was always just "because God said so" followed by a slap across the face. Kind of turned me off to the whole thing. It wasn't all bad, though. I had a great teacher in 5th grade who got me into science fiction reading Ray Bradbury and Arthur C Clark and of course watching Star Trek.

As for cheese, I got spoiled when I was in London so still pay the outrageous prices. I LOVE a slice of Apricot Stilton with a fresh pear for dessert. But you're right about burgers. A piece of crappy Kraft Muenster is good enough.

As I said in another post, a friend said to me "the pain of accepting the changes you're going through is 10x less than the pain you're going through trying to stay the same." That was really the kick in the pants I needed to hear that set me down a decent path mental health wise.

ADT really did a number on my mental health, but I got some help for that and now, a month out, I'm feeling a lot better so have started corresponding with others who are just starting on this "journey" and hopefully can help some of them out

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Amen, brother👍

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When people say they will "pray for me" it's something that helps them cope. So, in a sense, their prayers work. For them, anyway.

On a more personaly note, I'm very proud of myself because on Friday I really didn't feel like going to the gym. I was tired and felt a bit of nausea. But, I went anyway, and lifted lots of weights, and felt great afterwards.

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@ecurb

My story is like yours.....your peter looks like a turtle with its head sticking out of the shell.....I solved my incontinence problem by drinking a lot more water daily and taking 4 prunes a day.....My gleason scores are like yours . My metastis was to my pelvic lymph nodes....RT was completed a year ago....Tired alot....Water consumption seemed to solve my incontinence....Good Luck.....I m 75. Last quarter of the football game.

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I realize this is an old post, but after drinking tons of water, did the need to pee
finally taper down. That's my issue with extreme hydration! A 10oz bottle of water
will mean peeing every 10 mins for over an hour. Literally! What were your observations?
Thanks.

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@ranger44

The more I read on this forum, the more I am leaning towards no treatment of ANY KIND. Radical Prostatectomy is major, life altering surgery with serious life changing quality of life issues, Radiation almost as bad, and hormones and ADT, good God, destroy the man just to keep him alive. I am 70 years old diagnosed 2 months ago with Gleason 4+3= 7 w/ 70% in 6 of 23 cores, 3 cores had Gleason 3+4=7 w/ 40% I had Pirads 4 pm MRI w/ 12 mm lesion ( volume .42cc) my prostate is 50.4 cc so low volume tumor, I had PSMA PET showing nothing outside the prostate, and my Decipher score was 0.38 Low Risk of Metastasis, so it showed 3.4% risk of met at 10 years ans 3.4% risk of mortality at 15 years, average lifespan for men is 82 or less. Granted, that is with standard of care treatment. Risk with no treatment of any king increases your risk 100% so 6.8% big deal, I'll take those odds against ruining my life, I don't even want to have a catheter. I have done tons of research on all forms of treatment, including focal therapy, Hifu, Brachytherapy, Tulsa Pro, Cryotherapy, and they all have side effects. I have also done major research on the Ketogenic diet, intermittent fasting, and foods proven to fight prostste cancer, like cooked tomatos ( Lycopene) watched many You Tube videos with Dr. Thomas Seyfreid, Dr. William Li ( food as medecine) Dr. Ken Berry and many others. Glucose feeds the cancer cells, so eliminate all sugar of any kind, vigorous exercise reduses Glutamine which is the other cancer cell fuel, I've been on this one month, lost 13 pounds, feel great, yes it is an extreme regiment and diet for this former carb lover, and food lover, but I'm willing to sacrafice that rather than take a chance of even 10% of lifelong ED or Incontinence and havong to wear a pad or diaper, also some treatments like radiation can damage the Rectum and affect your bowels, I don't care if that's a 2% chance, I'm not taking it. At some point, quality of life is more important to me than seeing how long I can survive. Prostate Cancer is big business, billions of dollars and the medical industrial comples is geared to treat, surgery, radiation, emasculating drugs, you name it, not many doctors recommend diet & exercise to fight low or mid grade cancer. I watched my Dad go thru it, and even if it metastasizes after 10 years, it's not the end of the world, and very few men actually die from prostate cance, look up the ProtecT study in the UK same survival rate at 15 years for intermediate PCa 1/3 of men RP, 1/3 of men Radiation and 1/3 no treatment just Active Surveillance. Think very hard before having any treatment, there is no rush, even the most aggressive form take a while to spread.

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Although your stance on treatment differs from my own, I respect your decision as you are doing what works for you.
However, I do feel that you are placing false hope in all these supplements, foods, elimination of others, etc….in other words EAT THE CARBS!!!
All the things you mention only have anecdotal evidence at best and do NOTHING to prevent cancer, its progression or its spread. Sugar - in moderation - is OK. The notion that can starve cancer cells by its total elimination was debunked years ago. As I go through salvage radiation I meet men every single day in the ‘changing room’. Some Who ran, who did Ironman runs, who was a vegetarian, who took Vitamin D, E, F and freakin G!! It’s all BS - we all got cancer.
Eat what you want and what you enjoy: what’s the point of living on your own terms if you deny yourself the things that make you truly happy?
Your Decipher score has so much more relevance to your cancer’s behavior, than anything Dr Gundy, Dr Mercola or Dr Oz can sell you….EAT THE CARBS!!!

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@heavyphil

Although your stance on treatment differs from my own, I respect your decision as you are doing what works for you.
However, I do feel that you are placing false hope in all these supplements, foods, elimination of others, etc….in other words EAT THE CARBS!!!
All the things you mention only have anecdotal evidence at best and do NOTHING to prevent cancer, its progression or its spread. Sugar - in moderation - is OK. The notion that can starve cancer cells by its total elimination was debunked years ago. As I go through salvage radiation I meet men every single day in the ‘changing room’. Some Who ran, who did Ironman runs, who was a vegetarian, who took Vitamin D, E, F and freakin G!! It’s all BS - we all got cancer.
Eat what you want and what you enjoy: what’s the point of living on your own terms if you deny yourself the things that make you truly happy?
Your Decipher score has so much more relevance to your cancer’s behavior, than anything Dr Gundy, Dr Mercola or Dr Oz can sell you….EAT THE CARBS!!!

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I agree with you. Studies have shown very little correlation, if any, to diet and prostate cancer. My MO at Hopkins says regular exercise and trying to maintain a reasonable body weight is helpful. That may be in part for just overall health as most men with prostate cancer are older.

As a result of my prostate cancer and the SE, my sex life has tanked. I find pleasure in eating foods I enjoy. I do it in reasonable moderation, but don't deny myself hamburgers, FFs, ice cream or whatever your enjoyment may be.

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@chamblee54

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.

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Well, I will tell you this, my friend I’ve been going to MD Anderson for almost a year now couldn’t have asked for any better people pretty caring. I wish I would’ve done a little bit more research on where I was at free having my prostate removed with the option of Any other treatment Gleason report of 4+5=9 nodes in my hip and my shoulder region and maybe on my lung not sure yet waiting to see on that on a lung biopsy the side effect are pretty rough . Lupron shot 2 second shot every six months started with our Arleta , I’ll share a photo of what my fingers look like after taking a couple months of Arleta. We’ve switched it now to the Zytiga with a shot of prednisone .

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