Life after prostate cancer

Posted by tuckerp @tuckerp, May 9 6:13pm

I am new on here. Age 72. I had RARP in Jan 2020. surgery/biopsy revealed 1 out 12 samples with cancer. Gleason 3+3. Margins were clean. I elected to remove it. I had a one week catheter removal and a one month checkup. I am very active also use heavy weight training. All PSA tests have been < .1. Pet scan in 2022 was negative. I am not continent and I am impotent. Testosterone level is 705. I turned to Mayo clinic for a followup in 2023. I have not seen my initial Dr. Mayo suggested an AUS. Also prescribed cialis. Since I removed the catheter I wear a condom catheter during the day. At night with 4 bathroom trips I can sleep without wearing anything. I am married but my wife has terminal cancer. (4 yrs). I have no opportunity for an erection. I do have a partial during the night. I have not tried the cialis . My question would be where do I go from here. Any suggestions. I did not ask for any help when I did the surgery and maybe that was not a good idea.

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

Each person has to make their own decisions, but with Gleason 3+3=6 or even 3+4= 7 I just don't understand why someone would chose surgery with all the side effects, and there is a good chance the cancer comes back later anyway, then they want to do radiation and ADT. Seems to me the treatment is worse than the disease. I am 70 Gleason 4+3=7 but my decipher score is only 0.38 so low risk of metastasis, and my PSMA PET showed only a small area less than 1% of my 50.4 cc prostate as cancer, so contained. I have met with the surgeon, Radiation OC, and Urologist regarding various focal treatments, and I have decided to do Passive Surveillance, in other words no treatment other than the Keto diet, zero sugar and no carbs, it's a difficult diet but I have already knocked my PSA down from 6.62 to 5.12 after only 2 months. Glucose feeds the cancer cells, take it away and they can't live, also reduce glutamine thru vigorous exercise . I have zero side effects other than sugar cravings, and I have zero symptoms from the cancer, and I am enjoying every minute of life to the fullest, as I know it may be shorter in quantity, but better in quality.

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Each person has to make their own decisions, but with Gleason 3+3=6 or even 3+4= 7 I just don't understand why someone would chose surgery with all the side effects, and there is a good chance the cancer comes back later anyway, then they want to do radiation and ADT. Seems to me the treatment is worse than the disease. I am 70 years old, fusion biopsy at Mayo 2/2/24 showed Gleason 4+3=7 in 70% of 6 cores ( out of 23) but my decipher score is only 0.38 so low risk of metastasis, and my PSMA PET showed only a small area, less than 1% of my 50.4 cc prostate as cancer, so contained. I have met with the surgeon, Radiation OC, and Urologist regarding various focal treatments, and I have decided to do Passive Surveillance, in other words no treatment other than the Keto diet, zero sugar and no carbs, it's a difficult diet but I have already knocked my PSA down from 6.62 to 5.12 after only 2 months. Glucose feeds the cancer cells, take it away and they can't live, also reduce glutamine thru vigorous exercise . I have zero side effects other than sugar cravings, and I have zero symptoms from the cancer, and I am enjoying every minute of life to the fullest, as I know it may be shorter in quantity, but better in quality. I take 5mg Cialis daily and it's the only thing that helped with symptoms of BPH plus the added benefit of helping with ED

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@ranger44

Each person has to make their own decisions, but with Gleason 3+3=6 or even 3+4= 7 I just don't understand why someone would chose surgery with all the side effects, and there is a good chance the cancer comes back later anyway, then they want to do radiation and ADT. Seems to me the treatment is worse than the disease. I am 70 years old, fusion biopsy at Mayo 2/2/24 showed Gleason 4+3=7 in 70% of 6 cores ( out of 23) but my decipher score is only 0.38 so low risk of metastasis, and my PSMA PET showed only a small area, less than 1% of my 50.4 cc prostate as cancer, so contained. I have met with the surgeon, Radiation OC, and Urologist regarding various focal treatments, and I have decided to do Passive Surveillance, in other words no treatment other than the Keto diet, zero sugar and no carbs, it's a difficult diet but I have already knocked my PSA down from 6.62 to 5.12 after only 2 months. Glucose feeds the cancer cells, take it away and they can't live, also reduce glutamine thru vigorous exercise . I have zero side effects other than sugar cravings, and I have zero symptoms from the cancer, and I am enjoying every minute of life to the fullest, as I know it may be shorter in quantity, but better in quality. I take 5mg Cialis daily and it's the only thing that helped with symptoms of BPH plus the added benefit of helping with ED

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yes. I am glad your happy with the decision. I did not give it enough time but still not unhappy. My father passed away at 87 with prostate cancer. He had radiation at 65 and it came back at about 75. He had treatments for his last ten years. My Dr did not agree with removal but told me he could not do nerve sparring surgery after radiation. Best thing to him was to treat as you are. My PSA was 1.2. No cancer had even registered yet. Yet I decided the only way to try and save the nerves and have any chance of the cancer not moving was removal. If it was found outside the margins then I could do treatment. My margins were clear. So I am hoping I made the right decision as far as the cancer is concerned. Leakage is manageable. Impotence has not been important. Of the two, I miss sexual activiity as much as before. So I am trying to do the right thing now with my decisions going forward. One was seeing Dr Wolter at Mayo. I feel better about it. Thanks for the reason and good luck.

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@grandpun

If you want a good range of experiences with an AUS check the discussion here titled: "Can Someone help me about life after AUS 800 implant?" Posted by rodneyverrill.
I wish you and your wife all the blessings that can be. I lost my wife and sweetheart of 53-years to Covid (and no immune system due to a 20-year struggle with MS) a little over 2-years ago. My RALP for early but aggressive PC had to happen 2-weeks after she passed. That didn't help. Both recoveries take time - way more than I expected or realized.
You've gotten this far and you're able to ask cogent and meaningful questions. You're tough and thoughtful, keep it up and God Speed to you both.
GranPun

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Thank you. Yes I am following the AUS discussion. Learning what I can. I have been married for 51. My wife has Glioblastoma. She was perfectly healthy until diagnosis 3 yrs ago. May God speed to you as well.

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I truly feel for you, brother. As if your poor wife being terminally ill isn't enough you have to put up with this crap. I am 5 yrs out, mostly continent but as others have experienced, an occasional squirt or drop can come out of nowhere and there's nothing to be done about it, IMO. I think pelvic floor exercises are great but sometimes a tiny damaged branch of a nerve will fire and there it goes.
But your situation seems even more dramatic with having to wear a daily urinary condom. I would totally look into a Pelvic Floor Therapist because anything has to help at this point. But it might not get you all the way there and at that point you can reassess the situation re: surgery.
As far as impotence is concerned, I am still 90% impotent with an occasional semi "semi". Have tried all the pills and nothing works. Doctor suggested Trimix injections but I decided it seemed like way too much trouble to bother although I still may try it. I've gotten philosophical since my diagnosis, realizing that life really IS short and can end at any time. Bottom line: you don't get a reprieve from the Grim Reaper as we all have, for free. I've learned that cancer is still a bad word because it can be a bad disease and can kill you badly. If payment involves dribbling and loss of potency, well, I had a good run while it lasted.....Best to you and your wife and hoping that things turn around in your lives.

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@tuckerp

yes. I am glad your happy with the decision. I did not give it enough time but still not unhappy. My father passed away at 87 with prostate cancer. He had radiation at 65 and it came back at about 75. He had treatments for his last ten years. My Dr did not agree with removal but told me he could not do nerve sparring surgery after radiation. Best thing to him was to treat as you are. My PSA was 1.2. No cancer had even registered yet. Yet I decided the only way to try and save the nerves and have any chance of the cancer not moving was removal. If it was found outside the margins then I could do treatment. My margins were clear. So I am hoping I made the right decision as far as the cancer is concerned. Leakage is manageable. Impotence has not been important. Of the two, I miss sexual activiity as much as before. So I am trying to do the right thing now with my decisions going forward. One was seeing Dr Wolter at Mayo. I feel better about it. Thanks for the reason and good luck.

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ranger44's numbers are much, much higher than yours and still ( I think) he is on active surveillance.
You had a single core of 3+3 and a PSA of 1.2, right?

You remind me a lot of a friend of mine who had RALP after a slight increase in his PSA (2.6 to 3.3 or something). Wonderful person but a total worrywart. Got lucky probably cos he was young @ 54 and is happy with his decision now but for me it was a really poor life decision. He too was 1 core @ Gleason 6.

You would serve this community greatly by letting others know that these kind of numbers do not normally need treatment and could lead to less than optimal outcomes that affect livelihoods for all involved.

This comment may be viewed as harsh by some but my goal is to be helpful.

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@ozelli

ranger44's numbers are much, much higher than yours and still ( I think) he is on active surveillance.
You had a single core of 3+3 and a PSA of 1.2, right?

You remind me a lot of a friend of mine who had RALP after a slight increase in his PSA (2.6 to 3.3 or something). Wonderful person but a total worrywart. Got lucky probably cos he was young @ 54 and is happy with his decision now but for me it was a really poor life decision. He too was 1 core @ Gleason 6.

You would serve this community greatly by letting others know that these kind of numbers do not normally need treatment and could lead to less than optimal outcomes that affect livelihoods for all involved.

This comment may be viewed as harsh by some but my goal is to be helpful.

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Not harsh. Maybe I should have worded my initial post differently. Like "Made a dumb move need help". I have two friends that have PSA over 7 and they just monitor or treat. The one friend his PSA has started to drop. I felt at the time I would make myself sick knowing I had cancer. Dr gave me 85% chance that both impotence and incontinence would be fine. Especially having watched my Dad die from it. Well, little over 4 years and I think we might have got the cancer. (no guarantee) But I fall into the 15%. But I also dont know from there. My wife is sick so I have not even tried to get an erection in the 4 years. I miss it but....... . On incontinence I have not done kegel excercises. I put on a condom catheter and wear it all day. I can hold it while sleeping with no pads. I can do whatever I want with the CC. (except wear shorts). But I need to make the right choices from here. I am following the AUS thread but I probably should try exercising first. Sounds like the AUS has another 85/15 split. I know I have history where I would end up. Impotence very important to a healthy male. But I got 51 beautiful years. Its not the worst thing. I dont need any notches in my pistol.

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Hi 'tuckerp', just a word to encourage you to try the kegels first for incontinence. And give it time and consistent therapy. And following the AUS threads here you should note that the "85%" actually has a wide range of results. I'm super lucky - and maybe had an awesome surgeon too - since my AUS works great! It does take some learning and technique no matter what. But some guys seem to have devices that don't hold too well, or hold too much, or are difficult to use, or etc.
So I'd advise to don't rush. Exercise. And stay tuned in here. I'm always amazed about the helpful and thoughtful comments.
Good luck and keep up your good perspective.

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My Life after cancer is confusing in many ways. Why? Because my cancer will never go away. I am 3.5 yeas into survivorship. Still passionate but in different ways. For example my stage 4 prostate cancer teaches me to not focus on how long I will live, but how well I can live. Part of that Well (wellness) includes exercise, nurturing, and sharing tenderness with my wife. She loves hugs, back-rubs, and Beach Boys concerts. Her smile and dimples reactions indicate she appreciate my flirts.

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@proftom2

My Life after cancer is confusing in many ways. Why? Because my cancer will never go away. I am 3.5 yeas into survivorship. Still passionate but in different ways. For example my stage 4 prostate cancer teaches me to not focus on how long I will live, but how well I can live. Part of that Well (wellness) includes exercise, nurturing, and sharing tenderness with my wife. She loves hugs, back-rubs, and Beach Boys concerts. Her smile and dimples reactions indicate she appreciate my flirts.

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you are a lucky man. with a good attitude. I am sure life will have purpose. Dont let loose of her. I never realized how those small things made such a difference.

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