Prostate Cancer Support Group

Prostate Cancer Support Group

Wed, Jun 14, 2023
12:00pm to 1:30pm CT

Description

The Prostate Cancer Support Group is an in-person and virtual group for Mayo Clinic patients and their caregivers. The group meets monthly on the 2nd Wednesday of the month from noon to 1:30 pm CT.

Each month guest speakers from the Mayo Clinic oncology team provide education on specific topics related to prostate cancer. Following the presentation and Q & A time, members share information and experiences.

Our guest for June 14:
Our speaker will be Dave Hulbert who will present, “My Journey with Advanced Prostate Cancer.” Dave has a compelling reason to keep up on the latest in prostate cancer treatments. He will share much of that with us, including his experience with Pluvicto, the new theranostics agent labeled with Lu-177.

In-person space is limited, but all are welcome to participate via Zoom.

Join Zoom Meeting
https://mc-meet.zoom.us/j/99555673337?pwd=RXoyN3c1MlIxak1zRHRoUWtia0ROdz09

Location

Online & In Person
Mayo Clinic Baldwin 1-507
4th Ave SW
Rochester, MN 55902

I am one year out from my robot-assisted radical prostatectomy at Rochester. Prior to the procedure, my surgeon told me 90% of his patients were dry at one year but I seem to be among the unlucky 10% and am still using 2-3 pads per day. I've done my Kegals pretty religiously and also did a physical therapy pelvic floor rehab program but have not seen any improvement over the last few months. My local urologist told me he hasn't seen anyone improve much after a year and wants to put an artificial sphincter in me. Is there anyone out there who dried up more than a year after their surgery? Is there anything else you did that I can try? I fear that buying pads is going to be a permanent part of my budgeting and I'll be looking for a bathroom every couple of hours. My margins and nodes were clear and so far my PSAs have been undetectable so I guess that's a win but the urinary issues are frustrating. The ED is no fun either but nothing seems to help with that. Any advice or tips would be helpful and appreciated.

REPLY
@loki525

I am one year out from my robot-assisted radical prostatectomy at Rochester. Prior to the procedure, my surgeon told me 90% of his patients were dry at one year but I seem to be among the unlucky 10% and am still using 2-3 pads per day. I've done my Kegals pretty religiously and also did a physical therapy pelvic floor rehab program but have not seen any improvement over the last few months. My local urologist told me he hasn't seen anyone improve much after a year and wants to put an artificial sphincter in me. Is there anyone out there who dried up more than a year after their surgery? Is there anything else you did that I can try? I fear that buying pads is going to be a permanent part of my budgeting and I'll be looking for a bathroom every couple of hours. My margins and nodes were clear and so far my PSAs have been undetectable so I guess that's a win but the urinary issues are frustrating. The ED is no fun either but nothing seems to help with that. Any advice or tips would be helpful and appreciated.

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Three months of using it? or to live

Try after asking oncologists https://www.realmushrooms.com/turkey-tail-mushroom-benefits/

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I joined the prostrate cancer support group zoom call this morning (6/14). Could someone share how I can receive a copy of Dave's presentation, the grocery list and managing emotions and fear handouts.

Thanks

Jim

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I am 14 years post RP and still have enough stress incontinence issues to be mildly annoying. A belly laugh or stepping down off a high curb usually results in a small squirt. It is what it is, at least I'm cancer free. One possible avenue you might explore for the incontinence is to be sure that any meds you are taking are compatible with your new reality in terms of bladder control. For example, I have been on a low dose benzo for anxiety issues for most of my adult life. It works great for anxiety. but it also relaxes some of the muscles I need to control my bladder. So, I have a little more of a problem with leakage, etc. That's OK. I made my choice and I'm good with it..

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First of all, there are a number of types of pads. Those for light duty and those for heavier duty and then full disposable underwear. I am ten years out from surgery and I use three duty pads. In other words, I drip. I have heavy duty pads in my workshop and when I am out there working a lot of time I put one on because bending over and other types of physical exertion makes me leak harder. I can put one on in the morning and throw it away at night if I want. Keep kegling.

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Another request for a link to Jim's June 14 presentation.
Thanks,
Mark

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@loki525

I am one year out from my robot-assisted radical prostatectomy at Rochester. Prior to the procedure, my surgeon told me 90% of his patients were dry at one year but I seem to be among the unlucky 10% and am still using 2-3 pads per day. I've done my Kegals pretty religiously and also did a physical therapy pelvic floor rehab program but have not seen any improvement over the last few months. My local urologist told me he hasn't seen anyone improve much after a year and wants to put an artificial sphincter in me. Is there anyone out there who dried up more than a year after their surgery? Is there anything else you did that I can try? I fear that buying pads is going to be a permanent part of my budgeting and I'll be looking for a bathroom every couple of hours. My margins and nodes were clear and so far my PSAs have been undetectable so I guess that's a win but the urinary issues are frustrating. The ED is no fun either but nothing seems to help with that. Any advice or tips would be helpful and appreciated.

Jump to this post

I had robotic - assisted radical prostate surgery on June 6, 2022. It was at a Yale-New Haven affiliated hospital. The surgeon and I rarely communicated, but I guess he knew what he was doing. I just had my PSA level tested and it was .08. So far so good.
As most of the men posting here, I pissed blood and urine in copious amounts during the first month after surgery. My wooden bedroom floor is still stained with blood and urine streaks. I am still incontinent. But I usually wake up in time to make it to the bathroom. Despite that, I still have a few of those pink plastic hospital pitchers by my bed.
I use about 1 padded brief a day. I am 70 years old and retired so some days I simply stay naked. (My 5 cats don't care!) Other days I may need to wash and put on a clean one twice.
I use:
Amazon Basics Incontinence Underwear for Men, Maximum Absorbency, 2X-Large, 42 Count, 3 Packs of 14 (Previously Solimo)Amazon Basics Incontinence Underwear for Men, Maxim…
$36.32($0.86/Count)

REPLY
@ctpaul

I had robotic - assisted radical prostate surgery on June 6, 2022. It was at a Yale-New Haven affiliated hospital. The surgeon and I rarely communicated, but I guess he knew what he was doing. I just had my PSA level tested and it was .08. So far so good.
As most of the men posting here, I pissed blood and urine in copious amounts during the first month after surgery. My wooden bedroom floor is still stained with blood and urine streaks. I am still incontinent. But I usually wake up in time to make it to the bathroom. Despite that, I still have a few of those pink plastic hospital pitchers by my bed.
I use about 1 padded brief a day. I am 70 years old and retired so some days I simply stay naked. (My 5 cats don't care!) Other days I may need to wash and put on a clean one twice.
I use:
Amazon Basics Incontinence Underwear for Men, Maximum Absorbency, 2X-Large, 42 Count, 3 Packs of 14 (Previously Solimo)Amazon Basics Incontinence Underwear for Men, Maxim…
$36.32($0.86/Count)

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I had robotic surgery ( robotic prostectomy) in Brisbane at the Wesley, two years ago, July 2021. I was 69 at the time. Everything went very well and after 4 months it has settled down and I have had zero subsequent side effects.
I was relatively fit for the operation, for a 69 year old. My BMI was 26.

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@qwe

I had robotic surgery ( robotic prostectomy) in Brisbane at the Wesley, two years ago, July 2021. I was 69 at the time. Everything went very well and after 4 months it has settled down and I have had zero subsequent side effects.
I was relatively fit for the operation, for a 69 year old. My BMI was 26.

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My husband had RP surgery December 2022 at age 70. He too, was/is fit and BMI 25 He is gradually regaining continence. He weighs his pads and had levelled out at 85 gm a day - 2 small pads.
He has a pelvic physiotherapist and does his exercises daily.
Did your continence return gradually or one day you were dry.

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With reference to needing pads I hardly needed them after a month. Prior to that it was only a minor problem and in terms of volume maybe 10milliltres or a thimble full. So after two years it is rare and if do have a “leak “, it’s tiny.
I did the exercises that the physio recommended which were pretty lame but evidently they must have assisted. I have adequately strong urination flow and can hit the target at 1 metre. Sexual function is fine. From what I’ve read on this post it is apparent that my local ( Brisbane, Australia) surgeon must be very ( and unusually) competent. I’ve known 3 others ( local) who also have had good results

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