Gleason 6 (3+3) treatments

Posted by joe1 @joe1, May 21 3:39pm

Hi,
I had a biopsy and it came back with Gleason 6 (3+3). The urologist first told me it was extremely important that I have a biopsy done every 12 - 18 months to monitor this. 3 years later with no followups and now he's telling me we will just do MRI's instead (I also have ulcerative colitis so biopsy is extra painful). He also told me my cancer is nothing and don't worry about it. Problem is, he's told me a lot of things and then told me the exact opposite, so I'm not sure if I trust him.

Question for others with Gleason 6 ....... what type of treatment/monitoring are you being treated with?

Thanks

Joe

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Thank you for all your valuable information! Tomorrow is my appointment and still my mind is all confused and scare but with my family support I will be making the right decision, RP maybe my best choice with G 6 and all located inside the gland just to make sure all is out and deal later with the side effects but peace on mind - I will keep you updated. Thank you so much for your feedback-

REPLY

Joe,
Yes, the surgery was with robotic assistance at Johns Hopkins. Dr. Patrick Walsh (we go way back), recommended the surgeon, Dr. Mohammed Allaf, who I liked a lot. I saw a commercial on TV later with Dr. Allaf and Cal Ripken. He had performed the surgery on Ripken.
Side effects
1)For the first month or two, had NO incontinence/leakage after I took out the catheter (in 8 days). However, sometime in month two, I started to get light leaking when walking, laughing, sneezing or various other activities. Nothing requiring more than the lightest pad I could buy. I only used a pad when I was out for a long time or special occasions or for anytime I didn't want to embarrass myself. Never had an incident (in 3+ years). The best thing I did ( BY FAR), was to go to a PT who specialized in post prostate issues. She tested the strength of my muscles, observed my kegels (and fixed), gave me some simple exercises to help and pretty much guided me. I don't remember the last time I wore a pad. Still a very occasional drip and I don't wear light pants anymore.
2)Erectile disfunction issues. They first gave me a high dose of Viagra to use 3 or 4 times per week. Hated the way it made me feel. I tried some other things (a vaccum, which I also hated) and maybe some other things. Then I met another guy who was treated awhile ago and he said he also hated viagra and mentioned he was quite happy with Cialis (Tadafil). My urologist suggested a light daily dose 5 or 10mg and I was (and still am pleased with it). She also suggested adding the vitamin L'arginine, which I do. Can't remember how long it was before I stopped thinking about erectile issues and all seems fine. I would highly recommend watching this video from my urologist on erectile disfunction. She talks all the options and issues.


I'd be glad to talk more if the moderator can let us know how we can converse privately. Richard b

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@richardblackman

Joe,
I have two friends with Gleason 3/3 they've had for close to 10 years and are under active surveillance. Close watch of their PSA and an MRI every couple years is their "treatment." According to their doctors, they may never need additional treatment. I had similar for 2 years, but when my PSA rose, the doc found something suspicious in a digital rectal exam, then the biopsy showed a 3/4 Gleason. That's when they said I needed treatment so had a prostatectomy (3 years later). PSA still at zero and no complaints

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Wow, 3+4 and they recommended removal. My first urologist said I could get seeds, removal, or leave it. The second and third opinions from the urologists said removal was the equivalent to hitting the tumor with a sledge hammer, not needed.

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@richardblackman

Joe,
Yes, the surgery was with robotic assistance at Johns Hopkins. Dr. Patrick Walsh (we go way back), recommended the surgeon, Dr. Mohammed Allaf, who I liked a lot. I saw a commercial on TV later with Dr. Allaf and Cal Ripken. He had performed the surgery on Ripken.
Side effects
1)For the first month or two, had NO incontinence/leakage after I took out the catheter (in 8 days). However, sometime in month two, I started to get light leaking when walking, laughing, sneezing or various other activities. Nothing requiring more than the lightest pad I could buy. I only used a pad when I was out for a long time or special occasions or for anytime I didn't want to embarrass myself. Never had an incident (in 3+ years). The best thing I did ( BY FAR), was to go to a PT who specialized in post prostate issues. She tested the strength of my muscles, observed my kegels (and fixed), gave me some simple exercises to help and pretty much guided me. I don't remember the last time I wore a pad. Still a very occasional drip and I don't wear light pants anymore.
2)Erectile disfunction issues. They first gave me a high dose of Viagra to use 3 or 4 times per week. Hated the way it made me feel. I tried some other things (a vaccum, which I also hated) and maybe some other things. Then I met another guy who was treated awhile ago and he said he also hated viagra and mentioned he was quite happy with Cialis (Tadafil). My urologist suggested a light daily dose 5 or 10mg and I was (and still am pleased with it). She also suggested adding the vitamin L'arginine, which I do. Can't remember how long it was before I stopped thinking about erectile issues and all seems fine. I would highly recommend watching this video from my urologist on erectile disfunction. She talks all the options and issues.


I'd be glad to talk more if the moderator can let us know how we can converse privately. Richard b

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Maybe I missed it but how long ago was the surgery? I am following your items 1 and 2 almost exactly.

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@kookyburns1952

Wow, 3+4 and they recommended removal. My first urologist said I could get seeds, removal, or leave it. The second and third opinions from the urologists said removal was the equivalent to hitting the tumor with a sledge hammer, not needed.

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i was 3+3 my PSA was 1.2. 1 out of 12 samples. I opted for a 2 ton press. Little over 4 years ago. zero PSA since.

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@richardblackman

My surgery was February 2021

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Ok. I am exactly on your path. I had mine feb 8th 2021. I started ok on incontinence and then as I got busy couldnt stand the leakage. So I went to a condom catheter that I wear during the day. I can sleep at night without it. I get up twice during the night. I have not done a Kegel exercise since. I now am thinking I need to do something. I am 72. catheter is inconvenient. cant wear shorts. etc. I think I need some kegel training. Is that your recommendation?
On item 2 my Dr said use it or lose it. (basically). My wife got cancer shortly after and I have done nothing. I dont try to stimulate myself or anything. I tried the viagra and didnt like it (one night). I tried the cialis and during the night I had a 90% erection. But I have not tried it again. Just has not been important. Any suggestions there? My wife is on hospice so no partner.

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@tuckerp

Ok. I am exactly on your path. I had mine feb 8th 2021. I started ok on incontinence and then as I got busy couldnt stand the leakage. So I went to a condom catheter that I wear during the day. I can sleep at night without it. I get up twice during the night. I have not done a Kegel exercise since. I now am thinking I need to do something. I am 72. catheter is inconvenient. cant wear shorts. etc. I think I need some kegel training. Is that your recommendation?
On item 2 my Dr said use it or lose it. (basically). My wife got cancer shortly after and I have done nothing. I dont try to stimulate myself or anything. I tried the viagra and didnt like it (one night). I tried the cialis and during the night I had a 90% erection. But I have not tried it again. Just has not been important. Any suggestions there? My wife is on hospice so no partner.

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I meant feb 8th 2020.

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Another note on PSA. About 2 and 1/2 years in, my PSA rose to .117 . Not high, but scary since it increased over < .006 by a high percentage. My thought was that I needed to find the best radiation folks. I contacted Dr. Walsh, who immediately told me to get a new PSA bloodtest at a HOPKINS lab. I did and the PSA showed up as negligible. I took again in 3 months and again negligible. He now says a one-year test will be fine. Evidently a false test isn't unusual.
Unrelated I have two friends with 3/3 Gleason scores. They have been under active surveillance for close to 10 years. Their doctors feel there's an excellent chance they'll never need treatment.

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@tuckerp

Ok. I am exactly on your path. I had mine feb 8th 2021. I started ok on incontinence and then as I got busy couldnt stand the leakage. So I went to a condom catheter that I wear during the day. I can sleep at night without it. I get up twice during the night. I have not done a Kegel exercise since. I now am thinking I need to do something. I am 72. catheter is inconvenient. cant wear shorts. etc. I think I need some kegel training. Is that your recommendation?
On item 2 my Dr said use it or lose it. (basically). My wife got cancer shortly after and I have done nothing. I dont try to stimulate myself or anything. I tried the viagra and didnt like it (one night). I tried the cialis and during the night I had a 90% erection. But I have not tried it again. Just has not been important. Any suggestions there? My wife is on hospice so no partner.

Jump to this post

Tuckerp,
so sorry to hear about things going on in your life. Best advice I heard (and from this group) was to get PT from a post-prostate surgery specialist. It made a world a difference (assuming you get a good PT). I saw her starting in April for about 8 visits - every couple weeks, then once a month. She really helped my kegels and other simple (because otherwise I wouldn't do them) exercises. She also helped me with diet and was a great cheerleader for me. One of the things she was good at is understanding me. I told her how I hate exercises (I do love cardio stuff though) and have trouble following routine.
So she made everything simple for me and I do some things while in the shower and maybe 5 minutes total of exercise/kegels daily. She practices in Columbia, Md for Johns Hopkins (my surgeon recommended her). FYI, when I used a pad, I found a super light, small pad that was perfect. Seems way better than whatever you're using (see attached; about 3x4 inches & as thin as an athletic sock.
I'm not an expert, but I believe the "use it or lose it" refers to erections and not to incontinence. I did discuss the erection issue with my PT and she also had some good advice. What I understood was that it's important to deal with the erectile dysfunction early, because the urologists suggested progress may be limited after a year or so. I would highly recommend you watch the video I posted about in an earlier reply https://www.youtube.com/watch?v=f0bflKbR2To
that talks about erectile dysfunction. I went to her a bunch of times and she prescribes my pills and talked about options. She also highly recommended using a PT who gave me more practical advice. I've done a couple telemed visits with her and she may willing to do those w/o an inperson visit.

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