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.

Follow the group. Browse the topics or start a new one.

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.

@1jmccurry

I was diagnosed in about 2000 with a PSA of 2, but nodules on perimeter of the prostate suggested surgery. So,
I selected the seed implant to avoid incontinence and impotentance. 20 years later my PSA is up to 14, and then in 2 more years up to 16.7. Recently, we did a PET scan and discovered cancer migrating throughout my body.
So now we are on Lupron therapy and wondering what will happen next? It is difficult adjusting to certain facts
about my cancer. Is it really cancer? Seems after the first diagnosis we just waited for the next PSA reading to decide what next. It was always lets see what the next reading will be. Now it has spread throughout my body and
we are treating with hormone therapy and still waiting to see the next PSA reading. Compared to many readings,
a 16.7 is not tremendous. But, it is greater than 0, and that is a concern to me, along with not knowing what is next. Jim McCurry

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You selected the seed implant to avoid incontinence and impotentance.
What is seed implant ?

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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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Welcome to the group, good luck on your journey, keep posting updates, lots of people on here who will share their experiences of different treatments. I would say a big thing to remember, you are not alone, this personally helps me a lot. I wish you the best on your journey.

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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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Get used to fatigue and crepe skin and a bigger belly. Not fun, but no choice

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@stevecando54

Welcome to the group, good luck on your journey, keep posting updates, lots of people on here who will share their experiences of different treatments. I would say a big thing to remember, you are not alone, this personally helps me a lot. I wish you the best on your journey.

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Thank you

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@ecurb

Get used to fatigue and crepe skin and a bigger belly. Not fun, but no choice

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Reading about all the side effects is scary, but I guess it is better than the alternative.

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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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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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@johnernest

Reading about all the side effects is scary, but I guess it is better than the alternative.

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FYI- I was on ADT about 2-3 months before the side effects started kicking in.

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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.

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@jmc40

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.

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Your definitely on the right track- since it’s localized remove the prostate and track the PSA. I have ADT/ Radiation completed: since my cancer is in the two pelvic lymph nodes PSA:< .01 for 16 months so far. FYI only guy. Ttyl

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