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.

@veterancr

Thanks for your comments…very helpful….and congratulations on ur half
marathon!!…one of my goals…when u were incontinent for about a month, what
did You do and how much leakage?….since there is “stress incontinence “ ,
how long before u could run/work out and manage leakage?…were pads
enough…and how many and maybe how long…sorry for all the questions and many
Thanks for listening…I am kinda leaning toward the Davinci robotic as
well…long term radiation side effects kinda scare me although they are not
too common.

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@veterancr, how is the decision making going? Have you decided on a treatment plan with your cancer team? Did you seek a second opinion?

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@colleenyoung

@veterancr, how is the decision making going? Have you decided on a treatment plan with your cancer team? Did you seek a second opinion?

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Have decided on robotic prostatectomy in August or earlier if I can get in. This allows for any radiation follow up if needed. Got several opinions from Doctors as well as those men who had either surgery or radiation or both (surgery first, then salvage radiation) . My urologist has done many of these surgeries and is highly recommended. Already doing my pelvic floor exercises. One reason I chose surgery was due to my current issues (weak stream, some urgency, etc) already with a slightly enlarged prostate. I was a little concerned with radiation due to the above.

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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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Lots of bad stories to begin with. I had AMS installed August 2021. 3 weeks later, the tube let loose and started moving. It would tighten around my right testicle and move more. Very painful all the time. The pump never worked. Finally, Dec 2021 had a revision surgery to move the pump to the other side. Still could not get the pump to work. Cysto on Valentines day showed cuff had errored into my urethra causing all the infections I was getting. Emergency surgery 2 days later to remove all the hardware. Catheter in for 8 weeks to heal it all. Not all surgeries will turn out how you think they will. Same doc, but not the same outcome. Good luck to all who choose this option. One day at a time.

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I just had a Prostate mri which says I have one lesion with is pirad 4. It also says there was nothing suspicious looking found in any surrounding tissue, like lymph, etc. The little research I have done seems to indicate this means a significant risk of cancer. But the mri was on Friday afternoon, so I have now seen the report on mychart, but will not hear from anyone about it until after the weekend, if then. Any info on best case/worse case scenario would be appreciated. I assume they will want a biopsy.

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@paul55

I just had a Prostate mri which says I have one lesion with is pirad 4. It also says there was nothing suspicious looking found in any surrounding tissue, like lymph, etc. The little research I have done seems to indicate this means a significant risk of cancer. But the mri was on Friday afternoon, so I have now seen the report on mychart, but will not hear from anyone about it until after the weekend, if then. Any info on best case/worse case scenario would be appreciated. I assume they will want a biopsy.

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I know it is rough getting these initial reports, especially so when you are waiting for your medical team to interpret them. All I can suggest is to remain patient and positive. Be ready to ask questions to make sure you understand what your doctor is saying. Remember there will be multiple sets of data to look at (PSA history, MRI images, biopsy results, etc) to determine diagnosis and to develop a plan of care. Be patient, be positive, talk to family and friends. I found good information in the Prostate Cancer Foundation's Patient Guide (www.pcf.org). It can be a long journey. Please let the forum know how you are doing. Hang in there.

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I have a close friend who has suspicious small hard lump on top of his prostate and will have it biopsied soon. As a cancer survivor I am trying to tell him that even if diagnosed as cancer there are many steps and tests to be done before you get it chopped out. Am I right? I am a lung cancer survivor who went through countless tests after suspicion the stuff in lungs was probably cancer and it was 2 months after diagnosis I had the surgery to remove the LLL. He's ready to get it chopped out tomorrow…..help!

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My best advice is to stay calm and positive! I had an MRI and biopsy 3years ago, and they found pre-cancer. I had a 2nd biopsy last Thursday, and on Friday I was informed prostate cancer was found in 2 of the 20 samples. I have several options: active surveillance, prostate removal or focal therapy – which is killing the cancer cells and the surrounding tissue using ultrasound. All in all, IF we are diagnosed with cancer, we hope it's detected early before spreading, and you are in that position, so stay positive, ultimately it's not going to change your life very much, for now plan on having a biopsy in the next 2 months!

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Hello all,
I was diagnosed with Prostate cancer on June 17, 2022 following a biopsy. I spoke with my physician on the phone briefly, and waiting to schedule an in office visit to discuss options in further detail. My surgeon has suggested the following options on the phone: (1) active surveillance; (2) Robotic surgery to remove the prostate; and (3) focal treatment, which is the ablation of part of the prostate. I am 63, and weighing my options. Has anyone experienced the focal therapy procedure? Any comments would be much appreciated

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Hi, I’m Max in Texas. I was diagnosed early April , biopsied and tissue was sent to Decipher for analysis. I received a 3-month Lupron injection in early May. I’ve discussed potential treatment first with a Radiation Oncologist and next a surgeon. After the surgical consultation, my wife and I were leaning towards surgery, as radiation after surgery was a viable option should any cancer remain and/or reoccur. Gleason score was 4+3 and PSA was 19.8. In getting the Decipher results, my Gleason score is 8 and it is more aggressive than originally thought. A PSMA scan shows it confined to the Prostate. At the end of the Decipher discussion, my urologist said that if these results were his, he would definitely have the surgery. My wife and I have remained positive and optimistic (though those first few days were very rough on me) throughout. We felt immensely relieved after the urologist’s comment. Surgery is scheduled for August 23. In the meantime, I am having cataract surgeries! Be Positive!

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Hey Max,
Very similar progress/process to your situation here. I'm sorry you have to go through this mess, I'm just on the other side of surgery, 8 mos. It's quite a process and there's a lot of information to assimilate. If you have any questions I'm happy to share my experience.

I was not given or offered Lupron at your stage and have always wondered why. I think that was a VERY prudent move on your teams part, why not start starving it out while your waiting for the surgery?

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Max,
Like you, I agonized over making the decision to have surgery or radiation treatment. My Gleason score was also a 4+3, and apparently some spread into the seminal vesicles. The surgeon I talked to was confident he could take care of it while the radiation oncologist had a more pessimistic view. I have opted for surgery (scheduled for July 12).
Perhaps by strange coincidence, I also needed cataract surgery. Although I was apprehensive about the cataract surgery, the results on the other side of surgery will amaze you. The most difficult part is remembering the eye drops.
Best wishes,
David

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@joenfl2017

Diagnosed in 2018 with grade 2b. I’ve seen several urologists at Mayo in Jacksonville who were great doctors. I have had the HOLEP procedure for BPH which helped me immensely. I recently had another MRI to determine the next move as far as treatment. PSA is 13.5 as of yesterday. I will have a consultation tomorrow. Since my prostate is smaller now, the urologist I’m seeing now suggests having HIFU when the time comes for treatment. I’m totally against any radiation treatment. Anybody out there ever had HIFU treatment and if so, what facility did you use?

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I am hoping to get an assessment by Stanford medical center in the next few weeks. They do HIFU. Anyone have experience with Stanford? Sperlman is probably good, but far away for me. Thanks for any input.

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