Living with Prostate Cancer: Meet others & introduce yourself

I am a fellow prostate cancer patient not a doctor so I’m not giving medical advice just sharing Some thoughts based on my personal experience.

I have been on ORGOVYX since April 22. My doctor originally wanted to give me a six month LUPRON shot, but I had ran it read anecdotal stories of fellow prostate cancer patients who opted for ORGOVYX daily pills instead of the LUPRON shot. What I read was that while both achieve the same thing, That is killing testosterone, side effects tended to be milder for patients taking ORGOVYX instead of LUPRON. That has been my personal experience too, and I’m glad I made that choice. When I compare my experience to close personal friends that have also gone through prostate cancer I’ve had it considerably easier, which is why recommend that fellow PCa patients consider OGOVYX.

Yes, I have hot flashes, but they tend to be mild and their frequency and severity dropped off a lot after the first 30 days. Yes, I’ve put on a little weight; went from 186 to 192. Yes, I have fatigue but staying active mitigates a lot of that. I do upper body resistance training every other day and alternate between high intensity cycling, or brisk walks of at least 1 mile on hilly terrain daily. When cold weather comes back, I’ll switch to the elliptical, a treadmill, or a spin bike.

We are here to listen and help you. What comes next after the start of ADT?

They did not want to deal with my wife's PTSD.

I have been to UC Health in Colorado and they offered no help.

I have been to UC Health in Colorado and they offered no help.

I live in Illinois, but have spent a fair amount of time in Wyoming and also Colorado. The University of Colorado Medical Center is a center of excellence for cancer treatment, and might be a better option for you than going to Dallas. Here is a link to their website:
https://medschool.cuanschutz.edu/colorado-cancer-center/for-patients-families/cancers-we-treat/prostate-cancer
My other question is have you had genomics testing or a decipher score done on your pathology? If you have low risk cancer, you might be able to go longer without treatment than if you have high risk aggressive cancer. My testing came back with very aggressive high-risk cancer so my decision for treatment made itself.

Wow. My heart goes out to you. I am a two-time prostate cancer patient with aggressive stage three cancer.
What is your Gleason score?

I have prostate cancer, but living in Wyoming our doctors do not give you any options other than prostatectomy, chemo or radiation. My wife researched and discovered TULSA Pro in Dallas Texas. Long distance is not recommended as I can not get a direct answer from anyone. My PSA is 22, I've had an MRI, PSMA Pet Scan and prostate biopsy. Watchful waiting is where I am at. Now Dallas wants another biopsy, but they will not tell me why. I can not get a local biopsy because Wyoming docs will not help you if you go out of state. My wife and I are scheduled to go to Dallas in a month. Big hurdle though. My wife has chronic PTSD from an incident involving a doctor and hospital and a victim of WAR. She does not want me to get any treatment due to what has happened to her. And what happened to her is unspeakable and unforgivable. I understand her trust issues. I'm not sure I want to put her through anymore anxiety, even if it means I continue to watchful wait. I can not go to a hospital or doctor and leave her behind as the anxiety would be too much. My cancer is still confined to my prostate after 3 years. Just wondering if anyone else has decided to watch and wait. At 72, I have still live a wonderful life with my wife.

I have prostate cancer, but living in Wyoming our doctors do not give you any options other than prostatectomy, chemo or radiation. My wife researched and discovered TULSA Pro in Dallas Texas. Long distance is not recommended as I can not get a direct answer from anyone. My PSA is 22, I've had an MRI, PSMA Pet Scan and prostate biopsy. Watchful waiting is where I am at. Now Dallas wants another biopsy, but they will not tell me why. I can not get a local biopsy because Wyoming docs will not help you if you go out of state. My wife and I are scheduled to go to Dallas in a month. Big hurdle though. My wife has chronic PTSD from an incident involving a doctor and hospital and a victim of WAR. She does not want me to get any treatment due to what has happened to her. And what happened to her is unspeakable and unforgivable. I understand her trust issues. I'm not sure I want to put her through anymore anxiety, even if it means I continue to watchful wait. I can not go to a hospital or doctor and leave her behind as the anxiety would be too much. My cancer is still confined to my prostate after 3 years. Just wondering if anyone else has decided to watch and wait. At 72, I have still live a wonderful life with my wife.

I am 69 years old and was diagnosed with prostate cancer about 4 years ago. I have no family history of this disease. My PSA in 2020 was 6 and a biopsy showed I had a few cores with Gleason 6; no Gleason 7 or higher, so I went on active surveillance. Over the past 18 months my PSA jumped to 11 (Jan '24) and in July it is now 12 (as of July 2024). The latest MRI showed no additional growth in two lesions, however, the latest biopsy showed new Gleason 7 growth (3 + 4) in several cores with 4 being 5% to 10% in those cores. I had a PSMA Pet scan in June '24 that showed no metastasis. I have consulted with my Mayo urologist regarding the radical prostatectomy option and my Mayo radiation oncologist about proton radiation with possibility of ADT.