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mrcyz10 M lives in Colorado, USA. He was 51 when he was diagnosed in November, 2014. His initial PSA was 5.70 ng/ml, his Gleason Score was 6, and he was staged T2b. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

I've been a healthy and active person all my life, never had any medical problems excepting the occasional broken bone. I went in for a check-up when I turned 50 (the 50,000 mile service). My doc told me he didn't automatically schedule PSA testing but since I was adopted & knew nothing of my genetic history, he recommended I get the test. It came back at 5.7. I scheduled an appointment with a local urologist & he recommended a biopsy. I ended up going to a larger practice for the biopsy (since the first doc had dead fish in his lobby aquarium & I took it as a bad sign). The doc at the second group performed the biopsy (not as painful as you'd think and only sore for a few days). It came back as positive for cancer, 3+3 Gleason 6 in two cores and on both sides. Based on that result, the doc told me I was a candidate for watchful waiting. A second PSA test climbed to 6.3. Within the month, I had an MRI that showed a "high-grade Likert 5" lesion. At that point I was told the situation had changed and I was urged to consider prostatectomy. I was rather stunned and managed to scare the hell out of myself doing internet research. The YANA site was a Godsend & I read nearly every story. Up to that point I really can't say I had any symptoms of the disease---just bad test numbers.

I elected to get a second opinion (you MUST get a second opinion). I chose to go to the Mayo Clinic in Florida where I encountered the chair of Urology there, Dr. David Thiel. He reviewed my history and also recommended robotic radical prostatectomy. I felt that he, and the Mayo Clinic were by far more professional and experienced than the original surgeon I'd visited.

My surgery was scheduled for January 2016. I was quite worried about the advertised side effects (incontinence & ED primarily). I was in surgery for over five hours and awoke with a urinary catheter and a bunch of holes in my belly. Pain-wise it was tolerable with the help of the narcotics for the first week, afterward ibuprofen did the trick just fine. I had the cath in for 13 days & dreaded the day of removal fearing I'd be beginning a life in diapers. In fact though, I was completely continent within a few days. I'd attribute this to the surgeon's skill and the millions of Kegel exercises I did in the months leading up to the surgery. They said it'd take up to two years to appreciate the level of ED. I was pleasantly surprised to experience a return to nearly normal function within about three months with no need for meds (though I must admit the ED meds do work as advertised). I wondered what "dry" orgasms would be like & I have to say--just fine. Sure, it's different but no less intense or enjoyable. It's important to understand that the nerves often impacted during the surgery (erectile function) are distinct from the nerves that provide sensation.

One advantage to surgery is getting a true measure of the pathology. In my case, I was upgraded to Gleason 3+4=7 (I'd rather have been upgraded to first-class). The path report also found that the cancer was confined to one side of the gland. The scary sounding parts of the path report described "perineural invasion" and some indistinct margins-- enough new info to prompt more research and worry. Post-op, the doc said the surgery went very well and he told me to schedule a PSA test 5-6 months out. He was quite clear that the PSA had to be "Zero" & he told me not to panic if it wasn't stating there were plenty of radiological options to remove cells left behind.

In the ensuing months I lived my life as normal but daily dreaded the prospect of a non-Zero PSA. I'd just retired from a 30 year career in law enforcement and paramedic work & I was looking forward to my new phase in work & life without the need for additional treatment. I just did the repeat PSA and thank God, it came back at Zero. I know it takes years of repeat tests to know if one is really done with all this but I feel great knowing the first post-op test is as I'd hoped. I get to be with my wife and daughter, living our normal lives without the disruptions of further treatment.

Having cancer scared me and pissed me off. Taking PSA tests in the future will still be stressful but less so since I'm at a good starting point. My scars are hardly noticeable. I still ask my wife and kid to lift heavy things for me but I've always tried to get away with that. This is scary stuff brothers, choose docs and hospitals that you are comfortable with. Press the doc on his/her experience and ask lots of questions. If you're not comfortable---go elsewhere, I'm glad I did. The experience at the Mayo clinic was superb---they just really care and it shows.

I wish all of you the best & I'll update in the years to come. God bless us all & the teams of people who work to heal us.

UPDATED

August 2017

It has been 19 months since my surgery. I've been getting PSA's done every six months. All have been undetectable. Everything works as designed and though I dread waiting for PSA results, I'm always relieved when they come back good.

Had I gone with the first urologist's recommendation I would have had only "partial nerve sparing" and removal of the lymph glands adjacent. The docs at Mayo clinic recommended leaving the glands & performed full nerve sparing with the caveat that normal function might take up to two years to return. I felt pretty back to normal by eight months.

So far so good...

UPDATED

October 2018

Two and one half years out & life pretty damned normal and great. PSA remains undetectable & I sometimes go many days forgeting any of this happened. No pain, no incontinence, function intact & enjoyiong life. I wish this for you all. So glad I found the right team at Mayo Clinic. Do your research & don't settle for any doc who is not willing to answer all of your questions and one who is transparent about thier experience level. Tell your friends to get thier PSA checked. I almost didn't and had I not--this all would have likely been worse.

UPDATED

December 2019

At four years now and all good. Just got a "0" PSA on my recent blood test. In the past years I've had contact with a number of friends and aquaintances going through the same diagnosis, treatment decision, aftermath etc. I always encourage them to explore all options & most choose robotic surgery with excellent results. Pick your docs carefully, experience is key here. If you can get to a Mayo clinic or one of the other prominent insitutions do so. You're in the best hands with surgeons who do these procedures everyday. I you're on this site going through these decisions, I'm sorry this has happened to you. Stay strong, don't obsess on the possible negatives and get better. Take good care of yourself, get sleep, exercise, find the little bit of humor that comes with all of this & hopefully be done with it in relatively short-order. Best wishes for the new year and those to come.

mrcyz10's e-mail address is: mrcyz10 AT gmail.com (replace "AT" with "@")


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