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BRONZE

Craig Pynn and Susan live in California, USA. He was 62 when he was diagnosed on 22 January 2009. His initial PSA was 1.53 ng/ml, his Gleason Score was 8 and he was staged T3. His choice of treatment was Radiation + Androgen Deprivation Therapy. Here is his story.

I was diagnosed with prostatitis and BPH (Benign Prostate Hyperplasia) in 2001, but since my PSA level remained around 1.5 since then, my primary care physician always assumed it was simply an enlarged prostate she was feeling via the DRE (Digital Rectal Examination) at my annual physical.

In September 2008 I experienced a bout of hematuria (blood in the urine), which led to an appointment with a urologist, which led to a biopsy and cystoscopy in late 2008. The biopsy revealed 11 cancerous cores (out of 12 samples) and a Gleason grading of 4+4=8, i.e., aggressive PCa. Upon finding a lesion in my urethra via cystoscopy, my urologist subsequently performed a urethral biopsy, which revealed (to quote my urologist),"extensive cancer," staging me as T3 (technically T4 per the National Cancer Institute standards since the cancer had migrated to an unusual location) aka "locally advanced" PCa.

In the memorable words of the same doctor, "You're definitely not a candidate for surgery--and I'm a surgeon." At the time of diagnosis he prescribed Casodex, an anti-androgen at triple the normal dose (150 mg/day), which I stayed on for two months, and resulted in significant shrinkage of my prostate. In March 2009, we ended the Casodex, and I received a one-year implanted dose of Vantas, a LHRH agonist, aka androgen deprivation therapy (ADT). At that time I was also diagnosed with osteopenia, a precursor to full-blown osteoporosis. Since ADT depletes bone and muscle mass, I continue to receive quarterly infusions of zoledronic acid (Zometa) and take lots of calcium and vitamin D daily.

I began Radiation therapy (RT) in April, 2009, which consisted of 25 sessions of intensity-modulated RT (IMRT) pus 17 sessions of image-guided RT (IGRT), for a total of 79 Grays of radiation. At post-treatment follow-up visit with my radiation oncologist, he felt the Vantas was not forcing my testosterone level low enough, so he and the urologist recommended that I begin Combined Androgen Blockade (CAB), which is the Vantas plus 50 mg Casodex, in which state I remain in today, (December 2009).

My PSA has been undetectable (<0.001 ng/ml) since the conclusion of radiation (this is good), but my testosterone level has continued to increase (less good) and I will be moving to a different ADT drug, Degralex, when the Vantas implant is removed in March 2010. My urologist states I should remain on the CAB regimen for at least three years and then, "we'll see."

At 6 months out from the end of radiation, the well-known radiation side effects (urinary difficulty, bowel problems) have mostly disappeared. However, the ADT/CAB side effects remain: mostly in the form of several hot flashes each day and I wake up at least once each night with a hot flash, although these pass within a minute or so.

Since weight gain is yet another delightful side effect of ADT, I have cut out red meat, bleached grains and alcohol and have been able to keep my weight steady for the past 6 months. I have lost about half of my body hair; my sexual equipment has atrophied and sex itself is but a pleasant memory.

One thing that's helped offset the feminizing effects of ADT is I now have a buzz cut haircut that reminds me of my Navy days. I also got a tattoo (the words "prostate cancer survivor" written in Tengwar script from "Lord of the Rings" around my right wrist). I guess aggressive cancer incited more risk-taking "I don't really care what other people think" behavior than I thought I had inside me.

Resistance exercise is the well-documented antidote to muscle mass loss due to ADT, so I work out 45 minutes to an hour five days a week at the gym, focusing mainly on core muscle resistance using an exercise ball and various weight machines. I am not a free weight fan, but perhaps one of these days...

At this point it is down to living - and enjoying - one day at a time. The thing no one tells you about hot flashes is not that they aren't unbearable (they're annoying, but bearable), but that every time one occurs my body reminds me "yes, Craig, you have cancer." So be it. I'm still here - and plan to be for a long time yet.

 

UPDATED

March 2011

 

 

Well, I'm now 26 months from diagnosis and 21 months from completing IMRT/IGRT.

My PSA has been undetectable since November, 2009 as I remain in this "golden period" where the cancer still responds to androgen deprivation therapy. I'm currently on degarelix (trade name: Firmagon), which requires a monthly injection. Unlike Lupron it's an LHRH antagonist and operates differently. My doctor put me on it because I've never been able to achieve "castrate level" of testosterone; and degarelix is supposed to drive T down fast. However, mine seems to be permanently stuck at around 39ng/ml. Theoretically, I was supposed to go on an ADT "holiday" this spring, having been on it for two years now. However, my urologist, medical oncologist and radiation oncologist all urged me to stay on ADT for another year. Their reason is that becuase I had an atypical but aggressive (Gleason 8) form of cancer that did not express PSA (it was 1.5 when I was diagnosed) that caution is a wiser path. Since the side effects are relatively tolerable at this point, I've agreed.

Craig's e-mail address is: ctpynn@comcast.net