1. < Prostate Cancer
Moderator

Living with Prostate Cancer: Meet others & introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Mar 19, 2019

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.

philnob | @philnob | Apr 8, 2023

Hi,
Diagnosed with prostate cancer in 2012. Has anyone had breathing difficulties
while taking Relugolix.
Thank you,
Philnob

REPLY
whudup1 | @whudup1 | Apr 8, 2023
In reply to @bens1 "My Urologist requested a specific doctor to read my Prostate MRI. When I asked him why,..." + (show)
@bens1

My Urologist requested a specific doctor to read my Prostate MRI. When I asked him why, he basically indicated that the number of doctors skilled enough to accurately read the image was limited. That only served to confirm the choice of having the Decipher test as a back up …for everything…like a second opinion.

I hear the industry is trying to use artificial intelligence to improve these type of imaging diagnostic readings but obviously its not there yet.

I think my RO is great, with skill, experience, a comforting personality, and she answered all my questions including a couple with” I don’t know”. Many RO’s seem to subtlety avoid answering a question with “I don't know “ and there are, as a layman, many grey areas unfortunately, that do not have clear answers. It’s hard to know, when to know, that your answers to questions will no longer yield further insightful information that may help you make a better decision. I had to sort of minimize the grey areas the best I could and at some point accept some of the unknowns and make the best decision I could as a collaborative patient.

Jump to this post

Hello,
My MRI day before surgery stated Seminole vesicle Cancer was :Absent
After Surgery, Pathology report
Said a small amount that was removed

REPLY
roberdc | @roberdc | Apr 7, 2023
In reply to @web265 "Hi @roberdc , It's quite the jarring piece of information isn't it. We've all been through..." + (show)
@web265

Hi @roberdc ,

It's quite the jarring piece of information isn't it. We've all been through that and you'll get past it. I've had the surgery and was back to work within 3-4 months. My profession requires medical approval from the federal Govt and we all know what a daunting bureaucracy that can be.

In the majority of cases the cath comes out in 10 -14 ish days, then you have to be very careful for a month or so regarding minor incontinence and then off to work you go (at least that's when my doc released me, the Feds had another idea...). If I recall correctly I was back to work after the second PSA test, 3-4 mos, it only took that long because the feds require your PSA to be below a certain level.

I'm jealous of your discipline being a marathoner, I could never manage it. I do run very regularly though. It took me about 3 mos + before I could manage running without minor leakage though. Don't be discouraged if that takes a little longer. It did come back !

Kegels, Kegels, Kegels..if you do decide on the surgery, you'll need to become familiar with this exercise, both before and after surgery. My doc didn't even mention it, some docs send patients to a special PT for it and all manor of recs in between. I'd ask the doc for the most aggressive exercise training he's comfortable with regarding this. Your a marathoner, this is a cake exercise for you!

Best of Luck to you for the best outcome possible!

Jump to this post

"Jarring" is a good word. The timeline looks doable. I work at an oil refinery and I hope I can return to work within a few weeks. Our medical is super conservative about my being able to climb and and walk. Anyway, I thought kegels were for women! Guess I am the student.

Take care and blessings on your journey!

REPLY
roberdc | @roberdc | Apr 7, 2023
In reply to @hbp "I agree with Roberdc and he gave good positive advise. Post RP with no new meds..." + (show)
@hbp

I agree with Roberdc and he gave good positive advise. Post RP with no new meds should soon be like your prior life. The surgery and the post surgery catheter sound worse than they really are. If you are on meds (ADT usually) it takes a some adjusting to but it is doable. This business of staying alive can be inconvenient but it is a CANCER and staying alive is very much worth it. Good luck. We have all been where you are now.

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@hbp Thanks for the reply. "Surviving" is a term I am coming to grips with when discussing this. Take care and blessings on your journey.

REPLY
roberdc | @roberdc | Apr 7, 2023
In reply to @michaelcharles "roberdc: recovery from prostate surgery was not disabling for me at 72 yrs old. Catheter was..." + (show)
@michaelcharles

roberdc: recovery from prostate surgery was not disabling for me at 72 yrs old. Catheter was removed at 10 days and I actually was able to fully function thereafter "mentally". Slowly returned to walking, played a round of golf at 7 weeks and VERY strictly observed limited lifting direction, including light weight lifting, for 2 months.
Surgery does not have to be disabling if performed by an experienced surgeon. Many on this site have sought care at a recognized center of excellence. Continence recovery can be an issue (was not for me). ED is a separate issue.
this was intended to address your early fears.
this is a major surgery, I and many advise reading Surviving Prostate Cancer by Patrick Walsh, MD, and other resources such as the free Patient Guide available from the Prostate Cancer Foundation (pcf.org).
there is much to learn and consider, and you are at the beginning of this trip.
Best to you.

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@michaelcharles Thanks for the abundance of info. I appreciate the reality of knowing the long term recovery needed. I have Walsh's book. My urologist told me to read it and to focus on Mayo Clinic sites.
Blessings on your recovery and thanks for the encouragement.

REPLY
hbp | @hbp | Apr 7, 2023

I agree with Roberdc and he gave good positive advise. Post RP with no new meds should soon be like your prior life. The surgery and the post surgery catheter sound worse than they really are. If you are on meds (ADT usually) it takes a some adjusting to but it is doable. This business of staying alive can be inconvenient but it is a CANCER and staying alive is very much worth it. Good luck. We have all been where you are now.

REPLY
1 reply
michaelcharles | @michaelcharles | Apr 7, 2023
In reply to @roberdc "Greetings. My name is Bob Clark. Just diagnosed 2 weeks ago with lower right quadrant 30%..." + (show)
@roberdc

Greetings.
My name is Bob Clark. Just diagnosed 2 weeks ago with lower right quadrant 30% involvement. Waiting on a body & bone scan - a baseline I am told. My doctor is initially suggesting surgery since it is localized. This sounds like a good option for me.
My immediate fears beyond treatment is economic. I am 62 and hope I have enough saved to retire if needed. But I do want to keep working. My prayer is that I can return to work after the surgery catheter is removed.
Beyond that I am a marathon runner and hope to stay very active.
Thanks for this group.

Jump to this post

roberdc: recovery from prostate surgery was not disabling for me at 72 yrs old. Catheter was removed at 10 days and I actually was able to fully function thereafter "mentally". Slowly returned to walking, played a round of golf at 7 weeks and VERY strictly observed limited lifting direction, including light weight lifting, for 2 months.
Surgery does not have to be disabling if performed by an experienced surgeon. Many on this site have sought care at a recognized center of excellence. Continence recovery can be an issue (was not for me). ED is a separate issue.
this was intended to address your early fears.
this is a major surgery, I and many advise reading Surviving Prostate Cancer by Patrick Walsh, MD, and other resources such as the free Patient Guide available from the Prostate Cancer Foundation (pcf.org).
there is much to learn and consider, and you are at the beginning of this trip.
Best to you.

REPLY
1 reply
web265 | @web265 | Apr 7, 2023

Hi @roberdc ,

It's quite the jarring piece of information isn't it. We've all been through that and you'll get past it. I've had the surgery and was back to work within 3-4 months. My profession requires medical approval from the federal Govt and we all know what a daunting bureaucracy that can be.

In the majority of cases the cath comes out in 10 -14 ish days, then you have to be very careful for a month or so regarding minor incontinence and then off to work you go (at least that's when my doc released me, the Feds had another idea...). If I recall correctly I was back to work after the second PSA test, 3-4 mos, it only took that long because the feds require your PSA to be below a certain level.

I'm jealous of your discipline being a marathoner, I could never manage it. I do run very regularly though. It took me about 3 mos + before I could manage running without minor leakage though. Don't be discouraged if that takes a little longer. It did come back !

Kegels, Kegels, Kegels..if you do decide on the surgery, you'll need to become familiar with this exercise, both before and after surgery. My doc didn't even mention it, some docs send patients to a special PT for it and all manor of recs in between. I'd ask the doc for the most aggressive exercise training he's comfortable with regarding this. Your a marathoner, this is a cake exercise for you!

Best of Luck to you for the best outcome possible!

REPLY
1 reply
roberdc | @roberdc | Apr 6, 2023

Greetings.
My name is Bob Clark. Just diagnosed 2 weeks ago with lower right quadrant 30% involvement. Waiting on a body & bone scan - a baseline I am told. My doctor is initially suggesting surgery since it is localized. This sounds like a good option for me.
My immediate fears beyond treatment is economic. I am 62 and hope I have enough saved to retire if needed. But I do want to keep working. My prayer is that I can return to work after the surgery catheter is removed.
Beyond that I am a marathon runner and hope to stay very active.
Thanks for this group.

REPLY
1 reply
acmuceus | @acmuceus | Mar 23, 2023

Is anyone on the hormone drug Firmagon? If so what are the side effects to expect? The nurse mentioned hot flashes but there must be more.
Thanks to all.

REPLY
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