YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Lionel Repasky and Kathy live in Wesley Chapel, Florida, USA. He was 54 when he was diagnosed on May 18, 2009. His initial PSA was 5.0 ng/ml, his Gleason Score was 7 and he was staged T1c. His choice of treatment was Proton Beam. Here is his story.

May 09 was a wonderful month. I was seeing a new Endocrinologist to do follow-up from Thyroid Cancer (diagnosed in 1998, Total thyroidectomy then, followed by radical neck and External Beam Radiation in 2005). He noticed a PSA of 5.0 and set me up to see "the top guy" in the GU clinic. Well, full body thyroid and PET scans were completed about the same time as my trans-rectal ultrasound and biopsy - and wouldn't you know - I won the jackpot! They found a spot in my mid chest AND the biopsy of my prostate came back positive (2 of 12 samples positive, 25% GS 3+4 and 5% GS 3+3).

Some calls to all my doctors followed, to find out how to deal with two cancers at once. Two weeks ago (June 23, 2009)I underwent a flexible bronchoscopy and right thoracoscopy to remove a lymph node and do a wedge resection of a right mediastinal lesion. Biopsy revealed that to be metastatic thyroid disease. I'm awaiting follow-up with my endocrinologist to see if anything else needs to be done with that before proceeding to deal with my newly diagnosed prostate cancer.

Having gone down the cancer route once before does NOT make this any easier. I was somehow not surprised to learn I had prostate cancer, but the myriad option available on how to deal with it is amazing. Initially I sided with my urologist and wanted it taken out, but as I have read - and read, and read, and read - about all the treatment options, side effects, long term survival rates, etc., I am leaning toward proton beam therapy.

YANA has been a huge benefit: I just picked a listing of guys in my age group and started reading everyone's story. Each has offered insight and had me doing more research. And every person I've contacted has been super generous and very honest with me, which is great!! My wife, a pediatrician, has been fantastically supportive, and when I lean to one treatment or another, she has asked some very pointed questions and sent me off to find answers.

I've submitted my "application" to the University of Florida Proton Therapy Institute for evaluation, as I feel this offers an equivalent cure rate to a prostatectomy or conventional radiation, without all the side effects. All things being equal - and every specialty has there bias - it came down to post-treatment quality of life issues for me. I'll keep you posted on what happens.

Best of luck to everyone!!!!

 

UPDATED

July 2009

 

 

Had my initial consultation with the folks at University of Florida Proton Therapy Institute. What a great experience - well except for the horrid stuff I had to drink for my contrasted (barium) CT. Everyone was very open and helpful. The highlight was meeting a patient and his wife on their last day of treatment. They reinforced all the good things I had read about proton and the lack of side effects. She was very happy to report no effect on his abilities sexually (Yeah, you go Randy!). I'm awaiting a call to schedule the second visit - and more sure about my choice every day.

Later: Well, everything looked good for Proton, but a series of calls had my head spinning. Seems my insurance won't pay for it, and from a scientific point of view, I can agree. I know I will hear from lots of proton advocates, but based on a pure survival rate, proton cannot claim to be any better for the huge cost outlay. Our health insurance system isn't about health at all, it's about profit and cold analysis - cost vs. benefit. The lifestyle changes don't figure in the equation. And reality being what it is, I don't have the money to pay myself.

After reviewing my decision charts and weighing my options, I met with the wonderful folks at Moffitt Cancer Center in Tampa. Dr Biagioli spent three hours answering all my question and laying out the physics and studies - and patiently! I'd done a ton of reading and had studies to cite, but so did he.

I'll be pursuing a course of IMRT and High Dose Brachytherapy. We'll keep you posted.

 

UPDATED

November 2010

 

 

It's been a little over a year since I last wrote. Proton had been my initial choice, but that got voted done by my insurance carrier.

I underwent external beam radiation in September and October of 2009, and followed up with HDR brachytherapy in November 2009. The external beam was nothing, I honestly felt no side effects until week six, when I was a bit tired. The HDR however, was another thing. First, let me say that the team at Moffitt was very caring and professional, taking time to answer everything. There is not really any way to prepare for having something the size of a pack of cigarettes sewn to your perineum, laying around for an hour with your legs spread while the computer crunches the numbers, and then have a Star Wars machine hooked up to you as sixteen thin needles are passed through the sewn on guide and into your prostate.

There wasn't any pain, but indeed some anxiety. I know how the ladies feel when they're giving birth and everyone walks in to se e how they are doing - in the most exposed stance you can imagine! The actual HDR only takes a little while, maybe a half hour, then I got a dose of some short acting anesthetic and everything was removed by the time I woke up twenty minutes later. I got a week off and then got the second dose, this time with nineteen needles. With all the intrusion into the prostate itself, I had urgency issues right off. I guess all the nerves being intruded on. It was a bit difficult to control the urgency to urinate, and I had to be put on Flomax. Stayed on that about a month, then all seemed to have calmed down that I was to discontinue that med and return to normal bladder function.

The lingering "problem" if you will is erectile. It is easily remedied with Cialis. Other than that not being covered by insurance and being rather expensive, the meds have worked as advertised. There is a very noticeable decrease in ejaculate, sometimes almost none at all, but the sex is as great and satisfying as before the treatment. I dropped to 2.8 PSA at three months, then to 1.6 at six months, and got my "bounce" at nine months with a reading of 2.5. That was a little scary as it was not expected that soon, but at one year mark was back to 1.7.

All continues well at this time (November 2010) with check-ups to continue every three months for the next year at least. Anyone who has questions or wants to talk is welcome to give me a call or send email.

Please feel free to contact me at lrepasky@ppzdocs.com