YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Mark W and V live in California USA. He was 45 when he was diagnosed on June 27, 2007. His initial PSA was 6.1 ng/ml, his Gleason Score was 6 and he was staged T1c. His choice of treatment was Radical Retropubic Surgery. Here is his story.

On June 27, 2007, I received a call from a urologist, not well known to me other than a referral from my internist, with The News. The News, as most members of this group would know, is that my 11-core biopsy uncovered three positive cores with an overall Gleason score of 6. My PSA was also 6, which was enough to provoke the referral to the urologist (although somehow the same results three months earlier at Kaiser Permanente provoked them to do absolutely nothing).

The News drove me to the Internet. I read every article, blog and message board I could find, with the net result that I was scared and confused. At the time I comforted myself with the assumption that those in the most dire circumstances are most compelled to share their stories on the Internet. Probably a form of denial at the time, but over time I've come to think there is some truth to it. I swore that, if I had any good news to share, I would post it.

Here it is.

The bottom line is that, today on October 17th, I'm just fine. On October 1st, I went in for the full monty -- radical retropubic prostatectomy, no robots. The cancer is out of me (negative margins, negative lymph nodes), I have a barely visible scar, I'm not peeing on myself and the love plumbing is in good working condition. I've been to the gym four times so far this week and, after a slow start, I'm back to my normal work outs (short of my normal strength training, which I'll add next week). Of course, I still have my follow-up PSA tests. But, to my mind, I couldn't be happier.

Honestly, despite all the noise on the Internet, this is not the most unpleasant thing I've ever experienced (I think my time as a frat pledge takes that honor). Sure, the week dragging around catheter and a bag full of urine kind of sucks, but it kind of pales in comparison to standing along the Charles in the midst of winter in a T-shirt, blinded by a sanitary napkin and being beaten on the head by some angry frat jerk.

My advice to you?

Get a good team of friends, family and even strangers together to help you make good choices along the way (a secretary in my office, who has had most of her innards excised from various cancers, kept things in perspective for me and a stranger, now a friend, who IM'ed me from this group really helped me along the way -- thanks Andy!). My pregnant wife's overwhelming self interest was most valuable. She wanted me around and didn't entertain any options for me that wouldn't produce a "cure".

Time is a gift. After my conversations with many doctors, in my case, it was clear that a couple of months were not going to make a difference one way or the other. This gift of time is your main strategic advantage in dealing with this disease. If I needed heart surgery today, I'd probably go to the best hospital in the area and pray that whoever is on call that day is pretty good. With prostate cancer, in many instances, we have the luxury of the time to find the very best practitioners and to wait until they can treat us.

Everyone has a dog in this race. Companies that sell pomegranate juice, companies that sell multi-million dollar robots and high-tech radiation units, doctors who want to improve their batting average (or batting practice) and companies that sell tiny little metal seeds for exorbitant amounts, all have a deeply vested interest in your treatment choices. Don't believe the hype. My approach was to get a basic knowledge of the treatment options, with the deep understanding that I couldn't unravel all the marketing that is embedded in the studies and articles about PCa treatments. Instead, I focused on the thing I knew I could do -- methodically find the top practitioners in the western US, pick one I was comfortable with and let him/her use their preferred treatment method.

Don't settle for second best. Find the best doctor. Period. Not your local urologist, the one your friends like or that plays golf at your club. Ask every doctor you know who they would have treat them. Funny, you ask enough times and the same names come up over and over again. Connolly has a national doctor ranking service which corresponded well with the results of my own search. After a month, the same five names kept coming up, two robotic guys, one radiologist and two traditional RRP guys. Ultimately, one of the RRP guys made me and my wife very comfortable and bore all the hallmarks of a master of his craft at the top of his game (the other was a name-dropping bore -- I wouldn't let him fix a cat).

Focus on the things you can control. I scared the nurses in the hospital with my resting heart rate of 48. Soon after I was diagnosed, I committed myself to improving my physical condition in preparation for the surgery/treatment. No matter which treatment I ultimately selected, I knew that being in peak physical condition would aid my recovery. I'm back in action two weeks after surgery and I attribute some of this to working my butt off in the gym for the last three months.

 

UPDATED

December 2007

 

 

It's been a full two months since my surgery on October 1st and, I swear, it's the best thing I've ever done. Although I'm not due for my PSA update until January, I feel great, I'm fully healed and just having the offending organ out of me had produced a tremendous sense of relief.

Since my last posting, I did have a minor (now) scare. About three weeks after my surgery, I decided to attend a business conference in Cancun, Mexico. I purposefully scheduled the conference at that time, because I wanted something to look forward to as I went in for the "big cut" and I needed to manifest for myself the confidence that I would be back "in the game" after surgery.

Just before I left, there was a slight pink tint to my urine. I called my doctor, who didn't seem overly concerned, and he prescribed Cipro (a potent antibiotic) against the chance that I had developed a bladder infection. After I arrived in Mexico, it seemed to me that there was more blood in my urine, but I decided to give the antibiotics a chance to work. At that point, I was still wearing a small pad as a security blanket. By the next day, blood was pouring out into the pad. I was genuinely scared and set plans to get back to the States. Just as suddenly as the bleeding had started, it ended when I passed a reasonably large clot. Strange, after the clot, the bleeding just stopped and everything has been normal since.

So, now as of November 30th, my scar is barely noticeable (I'm going to try some of the silicon-impregnated scar "removal" dressings to see whether they can finish it off), I've lost about 25 more pounds through diet and exercise (I've given up meat and reduced refined sugar, I'm running about 18 miles/week and I'm back to my strength program), I would estimate that my potency is about 90% of what it was before the surgery without drugs (but I don't have those spontaneous erections anymore -- good in meetings, but a little disappointing when waking up!) and I'm 95% dry (during certain strenuous exercises, like 300 lb squats, I have a little leakage, but none at all during normal activities).

Everyone obviously has his own experience, but mine has been really, really good. I still feel that the surgery, while a little painful and disruptive, is not that bad overall. My advice is still to take control of things you can change and let your "team" worry about the rest.

 

UPDATED

January 2008

 

 

Today is the day I've been waiting for -- my PSA came back "undetectable". Sure, I may or may not be "cured", but there is no better news than this. Everything looks brighter, everything tastes better. After about 8 months of living with this albatross, it's been cast off my back (ok, leaving a feather or two...since I need five years without PSA to really be free).

My first post-op check-up was a little chilling. I got a peek at my post-op pathology and, based on the tumor volume of 2cm (they use a linear measure for some reason, I think because the maximum diameter implies the actual volume), the thing came out of me just before it became a very messy problem. "Just" might be another year or ten years, but that's close enough for me. The research I read suggests that 2cm is about the line between a 40% chance of extracapsular extension and a 60%+ chance. I generally like to be on the favorable side of statistics. Whew!

So, because erections and continence are understandably popular topics here, I'll share with you the fact that I am *bone* dry after four months (nary a leak during leg presses and situps even!) and the love plumbing is still working fine (not with quite the vigor of my early years, but it's just fine).

I know you are struggling with difficult decisions right now, but I just want you to know that people do come out of this OK. Sometimes it's really hard to see the light in this really dark time -- but there is light. The whole ordeal was more than worth it.


Mark's e-mail address is: pca@defmonk.com