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This is his Country or State Flag

Craig B and Deb live in Ohio, USA. He was 60 when he was diagnosed in July, 2009. His initial PSA was 4.00 ng/ml, his Gleason Score was 7a, and he was staged T1a. His choice of treatment was External Beam Radiation+ADT (Intensity Modulated with ADT). Here is his story.

My company physical was in 2008 and PSA was 3; there was no DRE. My primary care physician did a physical in spring of 2009 which included a DRE and he felt a lump. He referred me to a urologist. The urologist confirmed the DRE, did another PSA which was now 4. Did the biopsy with Gleason 7 (3+4), CT and bone scan were negative, and then he presented us with a smorgasbord of options. Terrified of incontinence, I chose intensity modulated image guided external beam radiation with neoadjuvant androgen deprivation (Lupron). The EBRT was a good experience. The Lupron was not pleasant. I can see from my laboratory notebooks I was not 'intellectually sharp' during that period. I gained a lot of weight. I became a couch potato. Started to 'bud' and had sensitive nipples. Probably had some stoic depression thinking back on that time frame.

Nadir after EBRT was 0.3 and it bounced a bit but overall rose to 3.5 by April of 2014. Biochemical relapse. Another biopsy, CT and bone scan suggested the cancer remained localized. Another smorgasbord of salvage treatments was presented and I chose 125I brachytherapy (seeds). The nadir, following a summer of 2014 treatment, was 0.5 in May of 2015. The brachy produced stress incontinence which has only cleared up recently, and ED. Unfortunately my PSA is rising steadily. It is now 3.5; biochemically relapsed. CT and bone scan remain negative. My prostate is essentially non existent. And, I'm interviewing oncologists.

I'm considering NaF PET after my next PSA test to see if we can anticipate where the cancer is forming. I understand NaF PET is more sensitive the higher the PSA and not very useful after ADT has commenced.

I imagine I'll eventually approve an ADT course to chase the PSA. Have a hard time imagining life without testicles and don't mind going from an A cup to a B or C. Compression shirts seem to do a good job of minimization. Regardless of the type of castration, I want it augmented with estradiol patches so that my bone density remains steady, my brain still works, and I will have some 'natural' hormones in my system. The interim test reports on the large UK patch test seem convincing to me and estrogen was mainstream once; abandoned due to blood clotting which the patch seems to negate.

However, it's been hard to find an oncologist in the Cleveland area that accepts the estradiol patch augmentation. It is my body and I'm not going to have it hormone free like a piece of meat. May be going to Canada or the UK for an oncologist.

One other part of the story is a $100 ancestrydna test performed winter of 2016 as part of a family genealogy project. I'm Great Britain, Irish, Western European, and Scandinavian. Whoopee. Actually it's kind of cool especially my wife's DNA. I sent the raw data and $5.00 to promethease.com which provides literature references to genes uncovered by the DNA testing. I have the rs2011077(G;G) as well as the rs351855(C;T) genotypes. That's the FGFR4 and CCAT2 genes. The related genes affect likelihood of metastatic PCa as well as likelihood of PCa. In 2008, when my story starts, most of the studies on these genes were going through peer review. But, there's a part of me that wonders what decisions I would have made had I had this data back then. Certainly I would have seen a genetic counselor and spent more than $105 to learn about my DNA and its relationship to PCA. And, I probably would have attempted to correspond with the senior authors on the papers. What would they do if they, or their fathers, had that genotype and a positive PCa diagnosis?

So that's the story so far. Many things I plan to do so I will fight, fight, and fight some more.

Every morning is a great morning.

Craig's e-mail address is: cvb@morg.org


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