Living with Prostate Cancer: Meet others & introduce yourself

Welcome to the Prostate Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet others living with prostate cancer or caring for someone with prostate cancer. Let's learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. Chances are you'll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Mentors on Connect.

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Let's start with introductions. When were you diagnosed with prostate cancer? What treatments did you have? Tips to share?

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

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.

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@wyoming

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.

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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?

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@wyoming

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.

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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.

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@robertmizek

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?

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7 on 2 sample and 6 or less on the other 10

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@robertmizek

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.

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

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@wyoming

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

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

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@wyoming

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

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Respectfully: a couple questions

Was your Gleason seven score a 4+3 or 3+4?

What happened at UH health in Colorado? Did they refuse to take you as a patient?

Do you have Medicare or Medicare advantage?

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@wyoming

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

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Also, did you get a decipher test?

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@robertmizek

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?

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Thank you for the information. I am 71 and have been lifting weights 4 days a week since I was 25, I also walk 4-5 miles every day. I am hoping to maintain my strength and endurance during the hormone therapy. Your experience makes me optimistic and almost every study I read, resistance training helps mitigate the side effects.

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@johnernest

Just joined this group. Diagnosed with prostate cancer 2 weeks ago,. Starting hormone therapy this Friday. Hoping to learn how others have dealt with their diagnosis and treatments.

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Diagonosed 2 weeks ago and on hormone treatment already . WOH .
Buy Dr. Patrick Walsh's Book '' Guide to Surviving Prostate Cancer " The best monney you will ever spend :
Rule # 1 Don't panic and make a knee jerk treatment decision you will regret . You will not die tomorrow . You likely had the cancer for years .
Rule # 2 Educate yourself before consulting with the medical experts . Read the book . Inform yourself of the tests , what the test results mean . The treatment options Surgical , Radiation, Focal Therapies . IT'S ALL IN THE BOOK & FOLLOW OTHERS ON THIS FORUM WITH SIMILAR ( NEVER THE SAME ) CANCER SYMPTOMS .
Finally _ Why the big rush to hormone treatment .
What is your MRI Data T Signal and PI-RADS Score .
Have you had a Biopsy ? If so your Gleason Score . # of Core samples ? How many with cancer
This forum requires more data . Than you had cancer 2 weeks ago .
Thanks

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