Acceptance of Prostate Cancer and its side effects

Our situation is similar I am G 9 CR discovered 8-21 which followed with RP and meds for 13 months. I am presently 77 with PSA .01 and total ED. Loss of sex is regrettable but it could be far worse.

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.

I’m sorry to hear what you’re going through. The side effects sound bad but you have your life to do many things that this cancer can’t take away from you. I wish the best and hope things turn around for you.

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!

Kevin

All so helpful. Thank you.

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!!!

Phil. You can’t go back, you have to make the best of you present and your future. This is easy to say but difficult to do but , whatever, the past is just our history not our present.

Thanks, Kevin.

Thank you for sharing. I have stage 4, spread top to bottom. It's been one year, get treatment once a month. Been short of breath since treatment started. Shortness of breath is way better then the pain I had before treatment. It's probably the side effect that gives me the most stress. I understand life will never be the same but I just keep pushing ahead. Sometimes I slip into that hole of depression but try to quickly get out of it. I try to laugh and enjoy the day but way back in your mind you wonder how long you can do this. There are some on here whom have said they have battled 10-20 years with it. That gives me inspiration and I say thank you so much.

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.