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Recently Diagnosed

jmm001 profile image
11 Replies

Im new to this forum. Im 43 years old. Just recently diagnosed with Gleason 6 3+3. Path report showed no invasion and localized. PSA was 3.8 up from previous year of 2.2 I had a very cautious Dr. Father had it young (51). SO Ive been getting checked since 40.. Ive seen 2 Urologists. Both have recommended DaVinci Removal. Im scared. Not because Im pretty sure it will cure me. BUt side effects. Im 43.. ED, Incontinence, No ejaculation and on and on scare me..

Im lucky I guess that Im 3+3 and a G6 compared to some others on here Ive read.

Still a take your breath away moment.

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jmm001
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11 Replies
AlanMeyer profile image
AlanMeyerModerator

Hello Jmm001,

I don't know if you need treatment now or not. Gleason 6 and PSA 3.8 are not normally considered indications of high risk. However age 43 and your family history might well change that. I'm not a doctor or any kind of expert, but I think that if you're going to need treatment in a few years it's better to get it earlier rather than later because the earlier the disease is treated the more likely it is to be cured.

I know this is scary, but it may not be nearly as horrible as it sounds.

Incontinence is treatable in a number of ways ranging from diapers to surgery to clamps. Furthermore, many men will recover from initial incontinence in a period ranging from a few months up to a couple of years. Some men will become mostly continent but still leak a bit when they exercise, cough or sneeze - easily caught by a pad in the underwear. Some men don't recover and for them, surgery or clamps are often very successful.

Sexual side effects are not what any of us want, but they're not as bad as we sometimes fear. You will most likely lose some potency but not necessarily all. You will certainly lose the ability to produce ejaculate but, surprisingly, that probably won't affect the sensations you experience. Most men I've read about say that an orgasm will still feel like it always did, even though there was no erection and no ejaculate. I had radiation myself, not surgery, but it too produced impotence and eliminated all but a couple of drops of ejaculate. However the sensation is still the same as it always was. I didn't think we could have orgasms without erections, but it turns out that we can, and they're just as satisfying.

Another surprise for many men is that we can still satisfy our wives or partners. Oral and manual sex are just as possible without an erection as with one and, if you study your partner's needs and keep improving your technique you'll be able to give her much better sex than you were ever able to do with intercourse. Talk with her frankly. Work on it. Be sensitive and caring. This is something that can be made to work. Some men may use pills, injections, or penile implants to recover erections but, personally, I don't think I need them to have great sex even without erections.

Getting old and losing things ain't fun, but if we're flexible and face it optimistically, we can adapt.

One thing that is critical if you're going to get surgery is to find a real specialist - someone whose regular practice is performing prostatectomies, not a urologist who treats all kinds of genitourinary problems for both men and women and does a few prostatectomies each year. The real specialists do from 50 to 200 every year. Ask around, get advice from others, read up on it, travel if necessary to find the best doctor. You want this problem solved in one procedure, not a mediocre job that leaves you with some cancer that will plague you for the rest of your life, or side effects caused by careless or unskillful work.

Best of luck.

Alan

rf3rf3 profile image
rf3rf3

You seem to have plenty of time to decide. Even with family history a Gleason of 6 allows you to wait and watch actively for a while. Definitely consider alternatives to radical surgery!

Roger2Dodger profile image
Roger2Dodger

Your numbers from your diagnose, tell me you have lots of time to make a decision. I would entertain AS. I would also suggest sending your biopsy remains to Prolaris for genetic testing.

Prostate cancer testing provides a new measure of the aggressiveness of an individual’s prostate cancer. Getting a Prolaris Score will give both the patient and physician additional information about the true nature of the cancer that no other test can. If your PCa is in the non agressive range , them you have lots of time to monitor your PCa.

I sent my biopsy results to prolaris and I found it gives you the Aggressiveness and non aggressiveness of your cancer.

TWii profile image
TWii

Hi jmm001,

My diagnosis last year was similar to yours but I didn't need more than a day to decide surgery was the best way to go. I'm 15 years older and, other than a few extra pounds, was in good shape. My meeting with DaVinci was Dec 19th and had the catheter removed the 26th. I was out that night, even drank a beer! After nine days I was done with pads. After 3 months PSA is undectable. Doc called me the poster boy for the surgery, I know how lucky I am.

The biggest thing I wish someone had told me earlier, and I don't see mentioned here very much, is to start bladder training and doing Kegel exercises now! It will only help when the time comes to get your bathroom habits back under control.

Good luck!

jmm001 profile image
jmm001 in reply toTWii

In doing kegels already. I read that is huge if I go down that road

Darryl profile image
DarrylPartner

youtu.be/4jAhkvQmm24

jmm001 profile image
jmm001 in reply toDarryl

Absolutely. I had mine done at Olmsted medical center. Ive referred to Mayo Clinic. My slides have been sent already for evaluation. Thanks for the video.

Thank you

rust profile image
rust

I wish I'd had removal when I was 40 and my PSA was 3.8 instead of 44 and PSA of 11. My father was diagnosed with stage 4 at age 72. Surgery was not much worse for me than a visit to the dentist although the catheter was annoying for a few days. In any case whatever you decide to do you have many options and apparently some time to think them over.

Fauvemarin profile image
Fauvemarin

Just wondering, but has no one suggested to you that there are alternatives to prostate removal. That a look at the Johns Hopkins Brady Urological Institute website (urology.jhu.edu/prostate/ca... or at the Dana Farber Cancer Institute website (dana-farber.org/prostate-ca.... Look at the treatment alternatives they list, and ask your Drs why not consider something other than removal.

This is the path I took at age 66. My CT and bone scans were clear. Gleason 8, PSA 2.7. Right side only but whole gland was treated. No quality of life penalties. I had TURP surgery (a good thing for HIFU) 10 years prior.

hifuprostateservices.com/

Jeff85705 profile image
Jeff85705

I would get a second opinion from another urologist AND from a clinical oncologist specializing in PCa. Maybe active surveillance is best, with an annual biopsy. Gleason 6 is not aggressive, at least not yet. The concern is your relative youth. Cancers in the young are often more aggressive. Don't make any rash decisions. Best wishes.

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