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.

@chuck53

Hi,
I was diagnosed with prostate cancer in June 2021 at the Mayo clinic in Jacksonville,Florida. After a bunch of tests, blood, urine, CT scan, MRI'S and Doctor visits, my surgeon told me he doesn't feel like I am not a candidate for surgery. I was diagnosed with NET cancer in November 2019 at Mayo, and they are afraid that surgery might adversely impact that cancer. I opted for gold seed and spaceOAR implants and finished my last SBRT radiation treatment two days ago on Friday the 5th. I am dealing with the side effects on a daily basis.
Chuck

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Welcome, Chuck. Congrats on finishing radiation treatment. What side effects are you dealing with?

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@jhowle

I completely understand. I’ve been reading everything I can since I was diagnosed a few weeks ago. I think I’m on information overload now. I seem to go back and forth between the feeling of “this can’t be” and “I have to be realistic”. I hope you find that sense of direction you’re looking for after your follow up tests and consultations. I’m hoping for the same. Take care.

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I was re-reading some posts and wanted to reach out and find out how your tests went. I have all my tests (I thought) done, only to find out they were for the bone structures only. I go back in December to have scans done on organs and flesh. The anxiety has subsided somewhat. But the continuing wait for the other scans is creating pressure. I do have a tentative game plan in place, IF no further cancer spots are found. My last visit was somewhat traumatic because we discussed all the things that I worried about. Including life expectancy. Time to take to heart on all the advice to be positive and set new goals. I have to chuckle.....I am about to start working harder as a retired person, than I ever did as a business owner. Ironic!

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@gregorylynn

I was re-reading some posts and wanted to reach out and find out how your tests went. I have all my tests (I thought) done, only to find out they were for the bone structures only. I go back in December to have scans done on organs and flesh. The anxiety has subsided somewhat. But the continuing wait for the other scans is creating pressure. I do have a tentative game plan in place, IF no further cancer spots are found. My last visit was somewhat traumatic because we discussed all the things that I worried about. Including life expectancy. Time to take to heart on all the advice to be positive and set new goals. I have to chuckle.....I am about to start working harder as a retired person, than I ever did as a business owner. Ironic!

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Hi, good to hear from you again. I understand about the pressure created by waiting. I think all of my tests are done now and I’ve been scheduled for a radical prostatectomy in January. I also had a very difficult and frank discussion about my many concerns. Although didn’t like some of the answers I was glad to have them so I can begin to move forward. Although some of my priorities have changed, I’m working on being positive and moving ahead. I wish you the best with your tests in December and everything your future holds. Take care my friend.

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Good to hear from you my friends. December, 18th will be my one year Prostate Cancer diagnose anniversary. I've adapted to hearing/saying "Can never be cured, but can be treated." My PSA Angst has shifted from a "fear/anxiety" automatic response to a more healthy "good-to-know" information is knowledge response. What's surprised me the most is how human kindness factors into my treatment plan. Family, friends, healthcare staff, even the VA have been extremely supportive and kind. Thankful for your update. Enjoy today.

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@proftom2

Good to hear from you my friends. December, 18th will be my one year Prostate Cancer diagnose anniversary. I've adapted to hearing/saying "Can never be cured, but can be treated." My PSA Angst has shifted from a "fear/anxiety" automatic response to a more healthy "good-to-know" information is knowledge response. What's surprised me the most is how human kindness factors into my treatment plan. Family, friends, healthcare staff, even the VA have been extremely supportive and kind. Thankful for your update. Enjoy today.

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I admire your positive attitude. It will serve you well. I have been dealing with prostate cancer for more than 20 years. The treatments I have had have been lifesaving and I have learned to live reasonably well with the effects of those treatments. But I have learned, especially lately, not to give up on a cure. My latest scan, a PSMA PET with Gallium 68 tracer, showed my recurrent cancer to be isolated in a few pelvic lymph nodes. It’s a possibility that they can be killed and I’m going for it. My PSA is 0.96. Some doctors believe that at each recurrence crossroads is an opportunity for cure. Please keep your hopes up.

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Hello, I am 4 yrs. post radical prostatectomy and 3 yrs. post radiation treatment. My psa's are undetectable at this time, but I suffer through urinary incontinence. My Doctor has discussed the male sling operation to help and I am wondering if anyone has experience with this procedure. He does not seem to be a fan of the artificial urinary sphincter surgery. Thanks

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@hmctgraybill51

Hello, I am 4 yrs. post radical prostatectomy and 3 yrs. post radiation treatment. My psa's are undetectable at this time, but I suffer through urinary incontinence. My Doctor has discussed the male sling operation to help and I am wondering if anyone has experience with this procedure. He does not seem to be a fan of the artificial urinary sphincter surgery. Thanks

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Hello @hmctgraybill51 and welcome to Mayo Clinic Connect. First, that is wonderful news that your PSAs are undetectable at this time. I wanted to connect you with a couple of other members, @scullrower and @stoney, who share your experience with incontinence to see if they may be able to come in and share if they know anything more about the sling and/or artificial urinary sphincter surgery, or if they even explored them as options.

Knowing what you know, what would be your preference?

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@hmctgraybill51

Hello, I am 4 yrs. post radical prostatectomy and 3 yrs. post radiation treatment. My psa's are undetectable at this time, but I suffer through urinary incontinence. My Doctor has discussed the male sling operation to help and I am wondering if anyone has experience with this procedure. He does not seem to be a fan of the artificial urinary sphincter surgery. Thanks

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My radical prostatectomy was in May 2019, which caused urinary incontinence for me. In order to have adjuvant radiation in the summer of 2020, I needed an artificial urinary sphincter. Dr. Daniel Elliott performed the surgery at Mayo, Rochester, and it has worked very well for me. We discussed both the sling and the AUS options, but the AUS was the sure cure and am very pleased with the results. My understanding is that Dr. Elliott is the surgeon in the world who has implanted the most AMS 800 AUS.

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@jonbuuck

My radical prostatectomy was in May 2019, which caused urinary incontinence for me. In order to have adjuvant radiation in the summer of 2020, I needed an artificial urinary sphincter. Dr. Daniel Elliott performed the surgery at Mayo, Rochester, and it has worked very well for me. We discussed both the sling and the AUS options, but the AUS was the sure cure and am very pleased with the results. My understanding is that Dr. Elliott is the surgeon in the world who has implanted the most AMS 800 AUS.

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Thank You very much. I think my doctor is concerned with my age (70) and has been concerned with the sling and a patient who has gone under radiation. It seems as though the AUS has worked well for you and that is good news for me to evaluate my decision on which procedure to pursue.

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@amandajro

Hello @hmctgraybill51 and welcome to Mayo Clinic Connect. First, that is wonderful news that your PSAs are undetectable at this time. I wanted to connect you with a couple of other members, @scullrower and @stoney, who share your experience with incontinence to see if they may be able to come in and share if they know anything more about the sling and/or artificial urinary sphincter surgery, or if they even explored them as options.

Knowing what you know, what would be your preference?

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Hello. Five years ago I had an artificial urinary sphincter inserted in my groin. I had been experiencing urinary incontinence since a prostatectomy and radiation treatments. I was going through 3 or 4 regular size pads a day. My urologist offered to do the surgery and I consented. Good decision. I still use pads from time to time to catch the occasional leak but my quality of life has vastly improved. The AUS has a cuff that surrounds the urethra which is controlled by a bulb located in the scrotum. Squeezing the bulb loosens the cuff allowing urine to flow. Gradually the cuff closes again. It’s all quite painless. I have found it best to sit when I urinate. Fumbling around to find the bulb was too difficult for me standing at a urinal or toilet. Since my bladder can still push pretty hard at times, I urinate at regular intervals to keep urges to minimum. Nevertheless. I am very pleased so far with the AUS.

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