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 group.

@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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I had a RP in August 2021, at Duke Cancer Center. My PSA climbed slowly over a 3 year period, 2.5 to 4.2 with no enlargement or masses that were detectable through a digital exam. I had a needle biopsy first that showed two areas with Gleason 7 ( 3+4). Then had a prostate MRI that showed a couple more lesions that were contained within the prostate. Next I decided to have a fusion biopsy to gather even more information. I absolutely love the multidisciplinary team that consists of pathologists, oncologists, scientists, medical geneticists, and clinical trial teams. The multidisciplinary team allows you to meet with 3 specialists one at a time so that you can make or start to form a educated decision on the path or course of treatment. I was told that I am young (62), and I am in good health, thus it made since to me to have a RP (kinda one and done was my hope!) I also consider my surgeon a rock star when it comes to RP, Judd W. Moul, MD is an Urologic Oncologist at Duke. I was told that the nerve bundles were spared, and the seminal vesicles and, lymph nodes were left un touched. I was in the hospital only 24 hours before I was home. I did have some pain associated with the cathater and was pleased to see it go after two weeks. Before surgery I had 4 or 5 sessions with a pelvic floor physical therapist. I resumed visits with the pelvic floor physical therapist 4 weeks after surgery. I was fully continent 8 weeks after surgery, I attribute this to the sessions before and after surgery with the pelvic floor physical therapist. I was back to work in six weeks. I have had two follow-up labs (every 3 months) for PSA, they both have been 0.01 undetectable. They did start me a a Penile Rehabilitation program right after the catheter was out. This consists of using a vacuum pump every day for 4, 5 minutes sessions. I also take Cialis (tadalafil) every Monday, Wednesday, and Friday (I have not noticed that this does anything?) to help blood flow to the penis. I am starting to get erections on my own, but still soft not hard enough for penetration. My penis will double to triple on side, but still hang down. I did start with Trimix about a month ago, and know have full erection from the injection of Trimix. I know that thought of sticking a needle in your penis is scary! Trust me it is not bad, and I love the results. I only inject Trimix once a week, Saturday mornings with my wife (this has made me fell somewhat normal). So that is my story and I am happy to friend or talk to anyone who may have questions or just needs an ear to bend.

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First diagnosed May of 2018. Stage 4, gleason 9, mets to spine. Pelvis, femur. My only yreatment has been abiraterone and eligard. Had prolia for a year and a half also. Psa has gone from 1230 to 0.02. Hopefully it continues

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@mikesuess

First diagnosed May of 2018. Stage 4, gleason 9, mets to spine. Pelvis, femur. My only yreatment has been abiraterone and eligard. Had prolia for a year and a half also. Psa has gone from 1230 to 0.02. Hopefully it continues

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I am a Class of 2020 Prostate Survivor with a December 2020 diagnosis Stage 4, Gleason 9, mets to liver and lungs. 30 Days, 24 sessions of radiation. Six Chemo treatments session three weeks apart. Hormone, Zometa treatments three months apart. PSA gone from the 150s to 0.78. Started Abiraterone in January 2022, responding positively. Strength + balance is coming back. My Ethos is back. Enjoyed your post.

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@dpybarra

I had a RP in August 2021, at Duke Cancer Center. My PSA climbed slowly over a 3 year period, 2.5 to 4.2 with no enlargement or masses that were detectable through a digital exam. I had a needle biopsy first that showed two areas with Gleason 7 ( 3+4). Then had a prostate MRI that showed a couple more lesions that were contained within the prostate. Next I decided to have a fusion biopsy to gather even more information. I absolutely love the multidisciplinary team that consists of pathologists, oncologists, scientists, medical geneticists, and clinical trial teams. The multidisciplinary team allows you to meet with 3 specialists one at a time so that you can make or start to form a educated decision on the path or course of treatment. I was told that I am young (62), and I am in good health, thus it made since to me to have a RP (kinda one and done was my hope!) I also consider my surgeon a rock star when it comes to RP, Judd W. Moul, MD is an Urologic Oncologist at Duke. I was told that the nerve bundles were spared, and the seminal vesicles and, lymph nodes were left un touched. I was in the hospital only 24 hours before I was home. I did have some pain associated with the cathater and was pleased to see it go after two weeks. Before surgery I had 4 or 5 sessions with a pelvic floor physical therapist. I resumed visits with the pelvic floor physical therapist 4 weeks after surgery. I was fully continent 8 weeks after surgery, I attribute this to the sessions before and after surgery with the pelvic floor physical therapist. I was back to work in six weeks. I have had two follow-up labs (every 3 months) for PSA, they both have been 0.01 undetectable. They did start me a a Penile Rehabilitation program right after the catheter was out. This consists of using a vacuum pump every day for 4, 5 minutes sessions. I also take Cialis (tadalafil) every Monday, Wednesday, and Friday (I have not noticed that this does anything?) to help blood flow to the penis. I am starting to get erections on my own, but still soft not hard enough for penetration. My penis will double to triple on side, but still hang down. I did start with Trimix about a month ago, and know have full erection from the injection of Trimix. I know that thought of sticking a needle in your penis is scary! Trust me it is not bad, and I love the results. I only inject Trimix once a week, Saturday mornings with my wife (this has made me fell somewhat normal). So that is my story and I am happy to friend or talk to anyone who may have questions or just needs an ear to bend.

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Hi dpybarra, just a bit confused by the implied timeline in your post. I'm thinking that your Radical Prostatectomy came after the fusion guided biopsy etc. Is that correct? Sounds like you have had great care and good results.

I'll add a shoutout for the multiparmetric MRI and the fusion guided biopsy (ultra sound and MRI) I benefitted from both. I had an anterior prostate tumor – and those are generally undectable by DRE (Digital Rectal Exam).

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@jimcinak

Hi dpybarra, just a bit confused by the implied timeline in your post. I'm thinking that your Radical Prostatectomy came after the fusion guided biopsy etc. Is that correct? Sounds like you have had great care and good results.

I'll add a shoutout for the multiparmetric MRI and the fusion guided biopsy (ultra sound and MRI) I benefitted from both. I had an anterior prostate tumor – and those are generally undectable by DRE (Digital Rectal Exam).

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Yes RP was after the fusion biopsy.

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@mikesuess

First diagnosed May of 2018. Stage 4, gleason 9, mets to spine. Pelvis, femur. My only yreatment has been abiraterone and eligard. Had prolia for a year and a half also. Psa has gone from 1230 to 0.02. Hopefully it continues

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I'm glad you're doing so well. Are you still using eligard and abiraterone?
I've got stage 4, gleason 9, mets to entire skeleton. I started treatment three months ago at UCSF, with Firmagon. Added Abiraterone and Prednisone about a month ago.

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