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.

michaelcharles | @michaelcharles | Apr 20, 2023
In reply to @hbnapu "Hello, I'm Rudy and had my biopsy on 10/22 and received my diagnosis of prostate cancer..." + (show)
@hbnapu

Hello,
I'm Rudy and had my biopsy on 10/22 and received my diagnosis of prostate cancer on 12/23/22. I had a Gleason score of 3/4 on 2 of 16 samples from my biopsy. Doctors recommended surgery because I'm 58. My PET scan were negative and I had RP on 3/15/23. During RP doctors removed lymph nodes on one side of my groin area, which tested positive for cancer.

Luckily, some of the nerves around my prostate were spared. Today is the 5th week since my surgery. Recovery has been going well with the exception of my incontinence.

I feel slight improvement with my incontinence. I have the normal leakage upon standing up, which I'm fine with.
What drives me nuts is when I get periods of slow leakage that I can't control, which is everyday. I do the kegel exercises but I don't feel they are working. I am using pads and depends underwear. I use at least 12 pads a day and use the depends to guarantee I stay dry.

I have been walking and moving around since surgery. I read and happy for others who did not get incontinent or had for a short time. The last 2 days I've been keeping my water limiting my liquid intake to around 64 ounces with slight improvement.

Any suggestions to what I'm not doing or doing wrong so I can improve my level of incontinence.

Thanks Rudy

Jump to this post

Agree with web265.
And, Kegel technique is important and if you have not had direction from an experienced PT, that night be helpful.

REPLY
hbnapu | @hbnapu | Apr 20, 2023
In reply to @web265 "Hey @hbnapu Sorry to hear about the persistence of this issue. If you had RP just..." + (show)
@web265

Hey @hbnapu
Sorry to hear about the persistence of this issue. If you had RP just about a month ago, you likely had your catheter out a little over two weeks ago, I remember how much I disliked the issues, but, I'd suggest it might be a little early to be overly concerned yet.

At the risk of being a "Capt. Obvious" have you discussed this with your surgeon or asked for a prescription for Physical Therapy for that issue? Some on here have gone to formal PT and found out that they weren't doing the kegels quite correctly and possibly there may be other exercises.
Hopefully this is only temporary!
Mike

Jump to this post

Thanks Mike. I viewed a video last night and it appears that I haven't been doing Kegel's completely the right way. I have been doing the new keels and I made some progress and I'm cautiously optimistic. The ironic thing is the instruction I received from the doctor before the surgery were just do it like your stopping your urination mid stream, which did me more harm.
I've been reaching out to the PA on my care team and she hasn't been very helpful so I'm discouraged from seeking help from them.

If my condition doesn't improve with kegels I will try the clamp for the persistent leak. I guess I never tried it because I thought I would make progress and not need it. I had my catheter removed after 8 days. Ironically enough I had the leaks with the catheter and I was prescribed Oxybutynin, which did not help. Rudy

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rdc61 | @rdc61 | Apr 20, 2023

New to the group I’ve been diagnosed with prostate cancer I have a low high risk treatment has been suggested removal or radiation. I’m up in the air like to hear from a few people that I’ve had both I’m 61 years old. I have an active sex life besides the obvious yes I want to get rid of the cancer, but I also want to know what this is gonna do to my girlfriend

REPLY
2 replies
vjlvpjalways | @vjlvpjalways | Apr 21, 2023

When I was at your point in time I ordered a penal clamp.. this really did give me some security at certain moments in time.. I never wore it at night and always emptied frequently.. and continued kegals.. also recommend therapy if prolongs.

REPLY
gkm | @gkm | Apr 21, 2023
In reply to @hbnapu "Hello, I'm Rudy and had my biopsy on 10/22 and received my diagnosis of prostate cancer..." + (show)
@hbnapu

Hello,
I'm Rudy and had my biopsy on 10/22 and received my diagnosis of prostate cancer on 12/23/22. I had a Gleason score of 3/4 on 2 of 16 samples from my biopsy. Doctors recommended surgery because I'm 58. My PET scan were negative and I had RP on 3/15/23. During RP doctors removed lymph nodes on one side of my groin area, which tested positive for cancer.

Luckily, some of the nerves around my prostate were spared. Today is the 5th week since my surgery. Recovery has been going well with the exception of my incontinence.

I feel slight improvement with my incontinence. I have the normal leakage upon standing up, which I'm fine with.
What drives me nuts is when I get periods of slow leakage that I can't control, which is everyday. I do the kegel exercises but I don't feel they are working. I am using pads and depends underwear. I use at least 12 pads a day and use the depends to guarantee I stay dry.

I have been walking and moving around since surgery. I read and happy for others who did not get incontinent or had for a short time. The last 2 days I've been keeping my water limiting my liquid intake to around 64 ounces with slight improvement.

Any suggestions to what I'm not doing or doing wrong so I can improve my level of incontinence.

Thanks Rudy

Jump to this post

Rudy I would strongly recommend going to a Pelvic Floor specialist who uses a biofeedback device. I am 5 years post surgery and still suffer from incontinence. You are only 5 weeks post surgery. I did go to a PF specialist after surgery and it really helped but it took a long time to really master the technique and you might have to keep doing them for your entire life. I would recommend the book Prostate Recovery Map by Craig Allingham. At my first consult after surgery, my urologist said it would get better and it did and it has. Everyone is different and while I am totally dry overnight I do use one diaper and pad per day which I am fine with. At 81, I am still able to ski, golf and play squash and lead a normal life. It was recommended that I get the AUS device but for me I thought the idea was much worse than using a pad and diaper per day. We are all different in terms of our tolerance to incontinence. Keep working on it and it will get better. I would suggest only using the clamp as a temporary device to avoid any embarrassing leakage.

REPLY
1 reply
hbnapu | @hbnapu | Apr 21, 2023
In reply to @gkm "Rudy I would strongly recommend going to a Pelvic Floor specialist who uses a biofeedback device...." + (show)
@gkm

Rudy I would strongly recommend going to a Pelvic Floor specialist who uses a biofeedback device. I am 5 years post surgery and still suffer from incontinence. You are only 5 weeks post surgery. I did go to a PF specialist after surgery and it really helped but it took a long time to really master the technique and you might have to keep doing them for your entire life. I would recommend the book Prostate Recovery Map by Craig Allingham. At my first consult after surgery, my urologist said it would get better and it did and it has. Everyone is different and while I am totally dry overnight I do use one diaper and pad per day which I am fine with. At 81, I am still able to ski, golf and play squash and lead a normal life. It was recommended that I get the AUS device but for me I thought the idea was much worse than using a pad and diaper per day. We are all different in terms of our tolerance to incontinence. Keep working on it and it will get better. I would suggest only using the clamp as a temporary device to avoid any embarrassing leakage.

Jump to this post

I appreciate the feed back and will look into the PRM book and the specialist.
Thanks, Rudy

REPLY
michaelcharles | @michaelcharles | Apr 22, 2023
In reply to @rdc61 "New to the group I’ve been diagnosed with prostate cancer I have a low high risk..." + (show)
@rdc61

New to the group I’ve been diagnosed with prostate cancer I have a low high risk treatment has been suggested removal or radiation. I’m up in the air like to hear from a few people that I’ve had both I’m 61 years old. I have an active sex life besides the obvious yes I want to get rid of the cancer, but I also want to know what this is gonna do to my girlfriend

Jump to this post

Begin with the book Surviving Prostate Cancer by Patrick Walsh MD.
Many men on this site have reported their experiences, and side effects, with different treatments, primarily Prostatectomy vs Radiation & Hormone Therapy (ADT).
Seek experienced physicians.
Focus on your treatment and recovery, and all will work out with a supportive partner.

REPLY
alanine | @alanine | Apr 22, 2023

Hello just recently diagnosed with stage 1 Gleason score 6. Doctors recommended active surveillance. I am wondering the association of alcohol and prostate cancer. Seems like everyone I speak to that has prostate cancer drank at least a moderate amount of alcohol. Any thoughts? Also Mayo recommended pomegranate juice. Any thought on diet and exercise?

REPLY
3 replies
gkm | @gkm | Apr 22, 2023
In reply to @rdc61 "New to the group I’ve been diagnosed with prostate cancer I have a low high risk..." + (show)
@rdc61

New to the group I’ve been diagnosed with prostate cancer I have a low high risk treatment has been suggested removal or radiation. I’m up in the air like to hear from a few people that I’ve had both I’m 61 years old. I have an active sex life besides the obvious yes I want to get rid of the cancer, but I also want to know what this is gonna do to my girlfriend

Jump to this post

You say you have a low high risk; which is it? What is your Gleason score? Active surveillance may be an option. Erectile Dysfunction is a real possibility. Read the literature; go to reliable websites like pcf.org

REPLY
Tracy | @fwintracy | Apr 22, 2023
In reply to @alanine "Hello just recently diagnosed with stage 1 Gleason score 6. Doctors recommended active surveillance. I am..." + (show)
@alanine

Hello just recently diagnosed with stage 1 Gleason score 6. Doctors recommended active surveillance. I am wondering the association of alcohol and prostate cancer. Seems like everyone I speak to that has prostate cancer drank at least a moderate amount of alcohol. Any thoughts? Also Mayo recommended pomegranate juice. Any thought on diet and exercise?

Jump to this post

Hello, alanine. I too was diagnosed w Stage 1 / Gleason 6 PCa earlier this year at the age of 66. After the initial fears, etc. I’ve settled into reading all I can and talking with those walking the same path ahead of us while I await my MRI. I expect to have Active Surveillance recommended as well. Initially I was of a much more aggressive posture but have learned so much since that is softening my position in that regard.

This is a great spot for research. For example, Mayo has this article re: Pomegranate juice…. https://www.mayoclinic.org/diseases-conditions/prostate-cancer/expert-answers/pomegranate-juice/faq-20058204

Other sources I’ve found helpful include PCF.org and the book Surviving Prostate Cancer by Patrick Walsh as mentioned by an earlier poster. There is an abundance of information but you do have to actively research.

As to the alcohol question, I have maybe 10 drinks a week with rarely more than 2 a day. That said, I’ve found little data on alcohol consumption but will watch for better information from others.

I wish you the best of luck while confronting your new reality. Lots of good research is taking place and, with a bit of luck, we can all weather this proverbial bump in the road and enjoy our lives with a bit of modification.

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