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This member is a YANA Mentor This is his Country or State Flag

Tom L lives in Illinois, USA. He was 64 when he was diagnosed in May, 2009. His initial PSA was 5.70 ng/ml, his Gleason Score was 6, and he was staged T1c. His choice of treatment was External Beam Radiation (Intensity Modulated with ADT). Here is his story.

I have had BPH (Benign Prostate Hyperplasia). for years and thus have gone to urologists regularly. I was diagnosed with prostate cancer in the past few months and have taken some steps that have proven questionable in hindsight.

I was favorably disposed to brachytherapy since I have some friends who have gone through it, and my urologist set me up with a radiological oncologist. Thus the process began. With nearly no notice, the urologist encouraged me to have a TUMT procedure (transurethral microwave thermotherapy) plus a four month Lupron shot to prep me for brachytherapy.

I was catheterized for the first time in my life as part of the microwave procedure. Now I've lost virtually all control of the urinary process. I'm still bleeding from a month ago, although the blood is subsiding. I wonder if the procedure was botched, if it was truly necessary and why the Lupron shot alone wouldn't have been enough.

I've decided I may not choose brachytherapy because I don't want to be "cath'd" again. I'd choose proton beam, and there will be two centers within 20 miles of my home, but neither will open for the next couple years. I feel as if I've been railroaded and I'm regretting my choices thus far. I may choose external beam therapy just to avoid catheterization.

I've ruled out surgery. My friends who had brachytherapy are regretting it, having suffered some serious setbacks, so I'm more confused than ever.

Thank God for YANA and other such groups for information, inspiration and support.

UPDATED

September 2009

Looks like it's going to be IMRT(Intensity Modulated Radiation Therapy). I'd prefer protons to photons, but protons would be prohibitively expensive. I will start a course of open beam treatment next week subject to the approval of my new (3rd) urologist, with whom I'm meeting today.

I've had terrible luck with the TUMT, incontinence to team up with the impotence from the Lupron. I'm still in diapers more than 2 months after the TUMT. The radiological oncologist says that the IMRT will not affect my incontinence or impotence negatively or positively, so it's OK to begin.

I will continue to update my story in the hope that what I've done right and wrong will help others. I tried to mount a survey on TUMT to see if my woes are typical, and I got nary a response. Either I'm the only person in the world who's had a TUMT or everyone else is happy. I'm sure neither assertion is true.

UPDATED

November 2009

Today I completed treatment 36, with 8 more to go. I should be excited about the treatments drawing to a (I pray, successful) conclusion. But I am still suffering from incontinence and extraordinary pain, and no one seems to know why.

Prior to the photon treatments, I had a Lupron shot and a TUMT, the latter involving catheterization. Somehow, I have been rendered incontinent and in great pain with a quality of life approaching zero. I would appreciate any ideas re: this.

Thank you.

UPDATED

December 2009

I have completed my 44 open beam radiation treatments. I pray the cancer is gone, but I am still incontinent, impotent and in some considerable pain each time I urinate.

I've gone to my 2-week follow-up with the oncologist and he prescribed a massive dose of Motrin to try to accelerate the swelling going down. My 0.2 PSA is probably meaningless because I had it done while I was undergoing the IGRT. I'm sure I shouldn't be doing it because I've had bleeding ulcers, but I'm doing it.

The pain is less intense but sharper than it's been for the past few months. I have intermittent blood and pus in the urine, so I am going to see an infectious diseases doctor.

I can't get in to see my urologist until the beginning of February. I have gone through three different courses of antibiotics even though no one is sure that I've had a urinary tract infection. Some tests have been positive, others negative.

UPDATED

January 2010

Two months out from my 44th and final radiation treatment, my PSA is 0.1. My radiological oncologist just told me it usually takes 18 months for the PSA to get down this low. To say I'm thankful would be a grotesque understatement.

My best wishes to the rest of you.

UPDATED

August 2010

After a year of incontinence following radiation and TUMT treatments, I finally addressed the situation with a TURP. I'd put it off a long time because of dreadful experience with the TUMT, but I hope this will cause urine retention, urinary tract infections and incontinence to cease.

Best wishes to all YANA members. Happy to discuss any aspect of PCa treatment at any time.

UPDATED

February 2011

In the Fall of 2010, I had a TURP in an attempt to minimize incontinence, and I must say it has made a huge difference. As a matter of habit, I still sleep on a towel and wear plastic-lined underwear, but the only incontinence with which I suffer is urge incontinence, which means I leak a bit when I cough or sneeze. Unfortunately, I'm asthmatic, so coughing and sneezing are common. But I'm learning to compensate with Kegels.

It's been a long, strange journey, but I've made enormous progress in the past two years.

Tom

UPDATED

January 2012

PSAs have been negligible and I seem to have recovered from the throes of prostatitis, prostate cancer, extreme pain, etc. I treated the PCa early and aggressively. Unfortunately, protons were not an option for me as they would be today in the Chicago area. But the photons seem to have done the trick.

The incontinence is slight and pretty much predictable, pain has vanished after years of painful urination, and I feel great. I was a newlywed when I was diagnosed, and I'm sure my wife asked herself many times if this was what she signed up for, but I am very grateful for her support and understanding. I couldn't have done it without her.

Gentlemen (and spouses), there is light at the end of the tunnel. Don't lose sight of it, and learn all you can about this horrible disease. Knowledge is indeed power.

UPDATED

July 2012

After about three years, I have had 48 IGRT treatments, a TURP, a TUMT and of course a biopsy. My PSA has remained virtually undetectable, actually 0.039 as of my latest trip to the VA. My current concern is my inability to take Plavix to thin my blood and prevent strokes. The last time I took it, I was essentially unable to urinate for about 18 hours. I am having a kidney ultrasound to see if there was kidney damage. I probably lost close to a pint of blood over the 18-hour period. I am now taking just a baby aspirin daily and hoping for the best.

My testosterone has not been measured for a year or so, but no doubt it's terribly low. I'm afraid to go back to the Androgel, even if my doctor would prescribe it for me. The last time I used it, I was diagnosed with PCa. So impotence remains a problem, as well as a small amount of incontinence, perhaps no more than a person my age would expect.

My radiation oncologist seems pleased with my low PSAs. In fact, I'm not even seeing a urologist, just the oncologist.

Best wishes and low PSAs to members of YANA!

UPDATED

August 2013

I am looking forward to next spring, which will mark the five year mark and remission from prostate CA. I have been blessed with negligible PSAs, although the ravages of the disease have not been pleasant. I have been seeing a VA urologist since there does not seem to be a credible urologist in the Elgin (IL) area.

UPDATED

February 2014

I was ready to celebrate my five-year remission based on negligible PSAs, but there has been a slight increase in PSA, from 0.01 to 0.2. I visited my oncologist, who advised me that sometimes PSAs fluctuate and this does not mean the PCa is returning. He found no tumors based on the rectal examination. However, he wants to see me in four months rather than the usual six. I've been advised to watch for painful or difficult urination, or blood in the urine. Otherwise, I feel great, go to the gym most mornings and am trying to adjust my diet to lower fat and sugar, more veggies, less meat. It will be interesting to see if this results in a diminishing PSA in the next four months. I sure would like to use the "R" word, remission.

Tom's e-mail address is: tkl60123@wowway.com


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