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Gene Grigsby and Kathy live in Washington, USA. He was 59 when he was diagnosed in March, 2007. His initial PSA was 8.00 ng/ml, his Gleason Score was 8, and he was staged T2c. His choice of treatment was Surgery (Retropubic Prostatectomy + RT + ADT). Here is his story.

After steady increases in PSA of 4.1, 5.0, and 8.0 I had my biopsy which came back as positive for prostate cancer.

I had surgery on May 2nd, 2007. My first post-surgery PSA test in August 2007 was 0.1. About a month later and not feeling real spiffy I had a CT scan and another PSA test. PSA had already elevated to 0.2 so the decision was made to commence hormone therapy and subsequent external beam radiation.

The radiation oncologist set me up for 39 treatments of the 3-C version which started in December 2007. After 17 treatments of this version and side affects of bleeding and some horrific internal convulsions when having a BM my RO switched me to IMRT (Intensity Modulated Radiation Therapy). The internal convulsions pretty much went away. I completed my IMRT in February 2008.

I felt pretty good the first couple months after completion of radiation but in May I started seeing some blood in my urine and I was having lower abdominal discomfort. The blood in the urine then elevated to blood clots that I managed to void over a period of about 36 hours. I already had an appointment set up with my Urologist who set me up for a cystoscopy. Well, they couldn't get the scope up my penis due to a "stricture" which the doc said was probably scar tissue from radiation. After he dilated my penis he was finally able to get the scope into my bladder. The result was that I had a bladder stone connected to an old suture. The following week I had the stone removed which turned out to be 2 bladder stones.

Leakage issues from surgery went away fairly rapidly and leakage after radiation went away fairly rapidly but since the stone removal in the latter part of June, I dribble all the time although not to bad when horizontal (sleeping) but when I'm up and about it's pretty much a steady dribble. When they removed the catheter after the stone removal they performed a "reverse flush" to determine how much fluid my bladder would hold. It's almost like a flapper valve that is stuck partially open. I go in next week (August 22nd) to try and determine what may be the cause of that; urethra issue, weak sphincter muscle, etc. Since leakage wasn't a major issue after surgery and radiation, I think it's something that happened during the bladder stone removal. Hope it's not the clip issue like I read about in the blog!

UPDATED

September 2008

I had my August 22nd appointment with my urologist and we discussed my leakage issue at length. He feels it is probably scar tissue from radiation but would like to have me do Urodynamic testing. I've got urodynamic test setup for Sep 18th and from the brochure the urologist provided it is a pretty intensive test.

I will also be getting my PSA test again so will have another update at that time.

UPDATED

December 2009

Then I failed the urodynamic testing (which was not fun) miserably. This meant that my sphincter was not operating the way it should. The urologist stated we could try injections (used to be collagen) which I did and that didn't work. After consultation, it was decided that I could either have an artificial sphincter implanted or live with the incontinence.

After another month, I decided to go for the artificial sphincter. I had my surgery for the implant in Jan 2009 and after a 6 week healing period the artificial sphincter activated the end of February. What a relief ! After two years I was finally cancer free.

I have had two PSA tests since Feb and all under 0.100. The incontinence was collateral damage from the surgery, radiation, bladder stone removal, scar tissue, etc. I now only leak under a lot of pressure and if I happen to sit down in the wrong position.

UPDATED

March 2011

I've had RP, ADT, and EBRT along with an artificial sphincter implant for incontinence. Since then everything has been relatively quiet, my PSA's have been less than 0.1.

Prior to having EBRT I was told by the RO that people with the mutated gene are twice as likely to get some other GI type cancer. I told the RO that we have to treat the known not the unknown.

The sad part is that every time I have any abdominal issues I wonder "if this is it".

UPDATED

April 2012

Original diagnosis was in March 2007. With a Stage T2C and a Gleason score of 8, I chose to have a RP. At my 3 month check, everything seemed to be doing well but in my 4th month, I didn't feel quite right so had another PSA performed which indicated that my PSA was climbing.

Consultation with my urologist had me start Lupron injections in October 2007 and IMRT in November 2007. Completed 39 radiation treatments in February 2008. Within 2 weeks after both the RP and radiation my incontinence would disappear.

In May 2008 I started spotting blood and within a week I was passing blood clots. After approximately 3 days of this the blood clots and spotting disappeared. That same week I went to my urologist who attempted to scope me. Due to scar tissue he had to dilate me prior to proceeding with the scope. Once this was done, the scope and subsequent picture showed I had bladder stones which the urologist was sure caused the bleeding. The following week the urologist performed laser surgery to remove the bladder stones. The collateral damage from this procedure rendered me 100% incontinent. I battled this for about 7 months thinking that any day my continence would return. After putting up with it for that long I finally went back to my urologist for another consult. This led to Urodynamic testing which revealed my urinary sphincter was barely working. This led to my opting for the artificial sphincter implant which was surgically implanted in January 2009.

The implant has been a godsend. I can now do the things I used to do, not be embarrassed to go anywhere, not have to use a penis clamp, not wear pads and not use Depends, etc. My life has somewhat returned to normal and I am now 5 years post PCa diagnosis.

UPDATED

June 2013

Incontinence was collateral damage from RP, IMRT, and bladder stone removal. I had a urinary incontinence device implanted which works great other than an occasional dribble.

UPDATED

July 2014

The great news is all of my PSA tests have been less than 0.1 since 2008 of which I have them twice a year now. The only hiccup was the incontinence which was pretty much alleviated with the artificial sphincter implant (Jan 09). Other than the occasional leak from a cough, sneeze or putting pressure on my scrotum when sitting, the implant has worked to perfection.

UPDATED

September 2015

After RP, IMRT, ADT and bladder stones removal I became 100% incontinent. After being on Depends and pads for a year I had an artificial sphincter implanted (Jan 2009). Life of the artificial sphincter (AMS-800) was rated at 10 years and mine lasted just over 6 years before I started having leakage and I had to have it replaced (April 30, 2015). Life is somewhat back to normal!

UPDATED

November 2016

After going through surgery, radiation and lupron injections I became 100% incontinent. In Jan 2009 I had an artificial sphincter implanted. The device was marketed as lasting 10 years. After just over 6 years the implant had to be replaced as I started leaking more and more. Hopefully I will get the 10 years out of this new artificial sphincter.

UPDATED

December 2017

I still get my annual PSA test and so far "undetectable". Due to my incontinence I had an artificial sphincter implant in January 2009. This implant was to have a 10-year life but I had to have my artificial sphincter implant replaced in April 2015. So, I made it 6 years before the leakage started getting slightly worse. So, I am somewhat back to normal. I can still have a little dribbling if I strain, sit wrong, or cough or sneeze really hard.

Gene's e-mail address is: genobeno AT q.com (replace "AT" with "@")


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