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Craig Pynn and Susan live in California, USA. He was 62 when he was diagnosed in 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 External Beam Radiation+ADT. 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 because 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.

UPDATED

April 2012

I have now had undetectable PSA since November 2009. Completed 3 years of ADT monotherapy using monthly shots of Degarelix (trade name: Firmagon). Since my PSA has been undetectable for >2 years, my docs (oncologist, urologist, radiation oncologist) all agreed that I have earned a "hormone holiday." My last Degarelix shot was in mid-February 2012. I asked how fast my testosterone would return. My oncologist said, "Three months." My urologist noted that my age (65) and length of time on ADT (3 years) were the major factors in determining rate of return of T. He said, "Could be anywhere from a year to never." All this proves is that they're guessing. In the meantime, all the ADT symptoms continue unabated (although we're only a month and a half into the holiday).

The major issue going forward will be when I will have to go back on ADT. As noted above, my PSA was only 1.5 when I was diagnosed with G8 T3 PCa, 11 out of 12 cores cancerous, so there's dispute about what PSA level will indicate time to resume ADT. I believe PSA doubling time rather than absolute value is the metric that matters. Only time will tell.

UPDATED

April 2013

Well, it's been another year of undetectable PSA (yea!), which means it's now been undetectable for 3 years 8 months so far. I had my last monthly Firmagon (Degarelex) shot in February 2012, so I've been off the ADT "juice" for 14 months. But before we get too excited, my urologist insists on a testosterone test every time I have a PSA test, and my last "T" test showed that I am still castrate (15 ng/Ml) even though I'm on ADT "holiday." Turns out that at my age (66) and having been on ADT for 36 months, there's a greatly diminished chance my testosterone will ever return. So, when considering ADT, also consider the risk of not getting your testosterone back even after ending treatment.

On a brighter note, my book, One Man's Life-Changing Diagnosis: Navigating the Realities of Prostate Cancer, was published by Demos Health (New York) in July 2012, and received a "2012 Book of the Year Award" in the area of consumer health from the American Journal of Nursing in January 2013.

As my treatment history shows, I had both radiation and ADT. Radiation is certainly the "gift that keeps on giving" resulting in quite a bit of urinary difficulty (slow stream, incomplete voiding, etc.) It led to a cystoscopy in March 2013, which showed a urethral stricture and calcification near the urethral opening in my bladder. This led to surgery in April 2013. My urologist remarked that he had never seen the extent of stones in my prostate and he spent 90 minutes extracting them through my urethra (happily, under general anethesia.) He opined that the probable cause of all the stones was a combination of prostatitus in 2001 as well as the radiation. We'll see via another custo in a few months whether this has ameliorated the problem.

UPDATED

April 2014

Wow. Another year has passed. My PSA remains undetectable (yea!) although I am still castrate (24 ng/dl) more than two years since my last Firmagon shot (February 2012). Since I'm still apparently hormone responsive, that's probably the reason my PSA remains undetectable. Not as many hot flashes, but more night sweats. But, as my wife is fond of pointing out about by continuing castrate state,"No T, no C."

The procedure I underwent last year to "clean out" the prostatic calculi created by radiation from my bladder and urethra has helped a lot, and urination continues to be reasonable. I've moved from Vesicare to Mybertriq to deal with urgency and dribbling. Mybertriq seems to work better (for me) than Vesicare.

So, this year, I've crossed the five year threshold of diagnosis, and soon the five year anniversary of completing treatment. And perhaps the five year anniversary this November of undetectable PSA. As an owner of a Gleason 8 advanced cancer (T3c N0 M0) I'll never know if I'm "cancer free," but I can sure take NED ("no evidence of disease"). I have much to be grateful for.

UPDATED

February 2016

Well, it's been more than seven years since my diagnosis of T4 Gleason 8 PCa on January 22, 2009.

The really good news is that my PSA has remained undetectable for more than six years now. The less good news is that I am still castrate (recent T = 13 ng/ml) even though my last shot of Firmagon happened four years ago in February 2012. In the memorable words of my urologist, "It looks like your pitutary-hypothalamic axis has been trashed." So, I'm living proof that an "ADT holiday" may turn out as if one is still undergoing treatment.

So, I continue to "enjoy" the SEs of living without testosterone. However, as my wonderfully patient wife, Susan, puts it, "No T, no C." So on balance I am grateful for the treatment, even though it means ongoing issues, including the occasional urethral stricture. My oncologist and radiation oncologist continue to make it clear that absent treatment I wouldn't be posting updates (even late ones!) here.

UPDATED

March 2017

My PSA remains undetectable after 7 1/2 years. Hooray! However, my testosterone never returned after I went on my ADT "holiday" in February 2012. The "holiday" has turned into a permanent vacation, but given the alternative, I can live with that.

The hot flashes have reduced in frequency and intensity to three or four night sweats a week. A congenital stricture in my urtehra was "enhanced" by radiation and remains the most bothersome after effect of IMRT radiotherapy. It requires me to self-catheterize daily, but I have gotten used to it.

Bottom line is that my aggressive Gleason 8 T4 cancer remains at bay and I'm very happy to be entering my 8th decade of life!

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


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