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Thomas W lives in New York, USA. He was 54 when he was diagnosed in January, 2005. His initial PSA was 6.00 ng/ml, his Gleason Score was 7, and he was staged T1c. His initial treatment choice was External Beam Radiation+ADT (Other) and his current treatment choice is ADT-Androgen Deprivation (Hormone) (ADT2). Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2014 SO THERE IS NO UPDATE.

Diagnosed with prostate cancer in 2005. Gleason score of 7. PSA running at 6. Choose hormone, radiation and seed implants. All was good till July 2012. PSA jumped to 68. Bone scan negative. CT of tissue negative. 12/26/12 biopsy done negative. Feb 2013 repeat PSA; 330. No idea where cancer is. They think its microscopic. Started on Casodex. And will have Eligard injection in March 2013.

I have researched and researched and have found virtually no data of anyone having this type of PSA. My urologist is stumped, in her experience people with this type of PSA have bone mets, or at the very least prostate biopsy positive. [It would seem that after the combined treatment chosen by Thomas a biopsy would be of little use since the material of the gland would be far from normal. Dr Snuffy Myers provides an explanation that highlights the confusion of the use of PSA in monitoring failed therapies in his video PSA Confusion.]

UPDATED

February 2013

Current PSA; 330. I'm on Casodex, in March they wish to start me on Eligard. Is anybody familar with this drug or have any experience with it? [Eligard - leuprolide acetate - is better known as Lupron. Entering either name in the site search engine will produce hundreds of references to the stories of men who have used this medication.]

UPDATED

February 2013

Started Reiki today, something I did for a while last year after my 2 heart attacks -- it helps. Felt much better afterwards. Going to look into meditation next and eventually acupuncture to see if that helps any.

In 2 days will have been on Casodex for one week. Other than slight nausea no other symptoms to report at this time. Oddly enough I feel pretty good. Then again I'm back to work after being off for 6 weeks due to extensive blood clot in my left arm, left jugular and left subclavian. A direct result in my opinion of running IV antibiotic in my left arm through a 20-gauge for 5 days. Never had a blood clot in my life. Also may be result of lying on left side for 3 hours to get biopsy of my prostate under general anethesia.

UPDATED

March 2013

This is an addenum as I'm already posted on this site. Last several years I've had urinary problems secondary to external radiation and seed implants. I've had a turp, multiple dilations of my urthrea I'm told I have extensive scar tissue there. Dec 2011 once again for I don't know how many times quit urinating and the bladder went into painful spasms. Went to local emergency room that has on call urologists, who came in and dilated me in ER and placed foley catheter. Later on that month I went under general anethesia and was dilated again. Some scar tissue was removed. Of course all this makes me incontinent, it is what it is. We were hoping that this would last 2-3 years.

March 1st. I can't void again same story, painful bladder spasms. Go to ER. I was wiser this time, I asked for an IV and IV dilaudid. I had 2.5 mg diluadid on board, let me tell you it still hurt to be dilated. Now have a foley catheter in again.

So now I'm considering a suprapubic catheter. It's either that or do this on a timely basis. The dilations last anywhere from 8 months to 1 year 2 months on this last one.

Anybody out there have some experiences with suprapubic catheters?

Had prostate cancer back in 2005. Elected radiation treatment, hormones, and seed implants. However because of that years later, I have extensive scarring in the urethral neck. And many times I have been unable to urinate at all. I've gone through one turp, multiple foleys. With urologist placing them, and of course multiple dilations, two of them in the emergency room while awake. The first time without medication..never never make that mistake if it happens to you. December 2011 back in OR to have another dilation, the urologist removed as much scar tissue as possible. We were hoping that it would last 2-3 years. It last one year and two months. Dec 2012 I was in hospital xmas week to receive IV antiobiotic for e-coli multi-resistant organism prior to biopsy of prostate. March 1 2013 bladder spasms and no urination to the emergency room again. This time I was smarter asked for an IV along with IV pain med dilaudid. I was given 2.5mg of same. Let me tell you the dilation was still painful, but nothing like last time. urologist said the scar tissue was back again, I could even feel the probe he was using break through the scar tissue. Last week I gave a urine sample to primary MD, the results are back. That 5 day course of IV antibiotics I got december 2012 it's either come back or never left. So in summary I now once again have a foley. And it's quite uncomfortable being an RN in an emergency room running around with one of these in you. I still have a multi resistant bug in my urine. so my options are? Long term foley which is out of the question for me. Continue the dilation which lasts approx one year. Or consider supra pubic catheter.

Although ultrasounds only show me retaining 100cc of urine I suspect that is enough to harbor and grow this organism.

If I use a supra pubic catheter I would get better flow of the urine. Which also leads me to ask these questions...

Although I have had prostate cancer in 2005, I had negative PSA; until july 2012. I also had multiple uti's past several years. What are the chances these infections are irritating the prostate and causing the PSA; to rise? Although I can't find any documentation showing PSA; rising that high 68-200-330 with uti's

Anybody out there have experience with supra pubic catheter?

UPDATED

March 2013

March 1st once again my urethra stricture closed off and I couldn't urinate, this is secondary to the radiation treatment I received in 2005 when I was diagnosed with prostate cancer, so off to the emergency room I go again, tell the emergency room nurse and physian assistant kindly call the urologist on duty, its going to take a urologist to dilate me and put in a foley, I also asked for an IV and IV dilaudid, I learnt my lesson last time when I was dilated in the er without meds. so the emergency room pa calls the urology clinic and talks to their physian assistant who asks what size catheter do I normally use and she'll be right down to put it in, emergency room physian puts her on hold and tells me what she wants to do. I suggested that she call the urologist on call and don't even think about coming down to emergency room to attempt foley insertion, and if she had any doubts on this read my electronic file. The message was relayed so she finally understood she might be in over her head. Meanwhile I had 2mg of dilaudid on board....via iv. The urologist comes down with his sounds..which I might add looks like knitting needles. He recognized me, as 1 year 3 months ago he had to dilate me in same emergency room. I know what emergency rooms as urology on call by the way...so..I'm dilated, and I can assure you 2.5 mg dilaudid didn't do much for the pain as he opens the stricture....so for the next two weeks once again I go back to work with a 16french foley in. I am a registered nurse and work in emergency medicine myself. From my perspective it's quite painful to work with a foley. Foley was taken out March 18th to which I proclaimed I've had enough of dilations. The turp didn't work, the dilations work anywhere for 8 months to one year and two months on the last one. I was pushing for a supra pubic...however urologist threw out there about straight cathing myself to keep stricture open. This would serve two purposes..due to the stricture I've retained urine which in turn caused me numerous uti's. Presently due to all the antibiotics I have received. I've ended up with a multi resistant e-coli in my urine. The only treatment for this is iv antibiotics..in december before my prostate biopsy I had 5 days of IV antibiotics to prevent sepsis. at that time the culture and sensitivity showed that 3 iv meds would work against the bug as I call it. I had a recent urine culture done and now we're down to 2 iv meds that will work. infectious disease indicates that this is a smart bug and can change to defeat antibiotics.

My last PSA; was 330 and I was put on casodex, of which I was on for approx a month, I had a repeat PSA; done today along with a dexa scan and my first dosage of eligard. The new PSA; is 36.

I've had several discussions with my urologist about doing hormone therapy with casodex and eligard..she's against it, wants to save that for the future along with proscar etc. She won't budge on it...also she's against intermittant therapy...so we shall see how that goes in the future.

Oh I should make it clear that I originally had prostate cancer in 2005 and elected to have radiation and seed implants with hormone treatment..all was fine till July 2012 when PSA soared to 68..and the fun and games begin again.

Thomas's e-mail address is: twolfrn AT netscape.net (replace "AT" with "@")

NOTE: Thomas has not updated his story for more than 15 months, so you may not receive any response from him.


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