YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Steve Sywak and Peggy live in New York, USA. He was 46 when he was diagnosed on June 15, 2007. His initial PSA was 3.13 ng/ml, his Gleason Score was 6 and he was staged T1c. He is undecided as to his treatment and says , as far as his story is concerned "Too new to this...I'll fill this part out later." But he has taken a sound first step by getting a second opinion on his pathology report from an expert.

I sent my usual annual reminders to Steve in March and May 2009. His response was that he was that he was as busy as..... but would update soon. He hasn't, but clearly for him there is life after prostate cancer! His story is still worth reading

 

UPDATED

September 2007

 

I'm scheduled for a robotic laparoscopic prostatectomy, with Dr. Ash Tewari at Weill-Cornell Medical Center in NYC on October 8. I'm scheduled for an Endo-rectal MRI (EMRI) on September 19th (and Rush concert at Madison Square Garden on the 17th)

However...I just had a TWO HOUR consultation with a Dr. Jeffrey Glasser (urologist) in NYC last Thursday. He had PCa a year ago, and had his prostate removed by Dr. Bertrand Guillonneau at Sloan Kettering. "Manual" laparoscopic radical prostatectomy, as opposed to "robotic." But Dr. Guillonneau was the first to develop laparoscopic, and Dr. Glasser said he had NONE of the "side effects" after surgery. More importantly (to me) is that Dr, Guillonneau had recommended "Watchful Waiting to Dr. Glasser. Dr. Glasser is 10 years older than I am, but had the exact same stats that I did.

Also, add to the equation that the Urological Assoc. of America (I think it's called) has completed a study showing that for patients with low-risk PCa (like me!), there is NO SCIENTIFICALLY MEASURABLE DIFFERENCE in the outcome from the various therapies Surgery, Radiation, Hormone, and Watchful Waiting. The decision, Dr. Glasser said, has to be based on something else...emotion.

He also told me that I have done my homework (always more to do, of course!), and that I probably know more than many interns about PCa. Also that my attitude and approach are good.

So, after I get the results from the EMRI, I may take up Watchful Waiting. Especially since the EPCA test is coming out in a little over a year. It should help me get a sense of how aggressive my "personal" cancer is.

If the cancer is near the margin of the organ, I'll probably go with surgery. Haven't decided between Guillonneau or Tewari. BOTH are the BEST in their specific specialty, so I really don't think I can go wrong. And Tewari's in my insurance plan.


One thing that Glasser confirmed for me, that I had read, but that Tewari has NEVER mentioned (or responded when I asked) is that a roughly 1" section of the urethra IS removed, along with the prostate. Your penis CAN be reduced in length.

That will make a lot of women breathe easier! (Just kidding, honey!).

--Steve.

 

UPDATED

March 2008

 

 

Well, a lot has happened since September 2007.

First of all, I have had the robotically assisted laparoscopic radical prostatectomy, with Dr. Ashutosh Tewai, at NY Presbyterian Hospital (Weill Cornell Medical Center--if I got that all right!). I had the surgery on January 14th, 2008.

It was supposed to be on October 8th, but my back was bad. Then it was supposed to be November 19th, but I was scheduled for back surgery on November 5th, so we postponed it. Then it was supposed to be January 10th, but the doctor will be out of town. Then it was scheduled for Saturday, January 12th, but the support staff couldn't make it! Finally, we scheduled it for January 14th.

But here's where it gets FUN! On December 10th, 2007, my company sent out an e-mail that they were changing insurance carriers, and my new carrier did not cover my doctor - he was out of network. And what does my doctor do when he's out of network? HE CHARGES HIS FULL $19,000 FEE UP FRONT.

Needless to say, I made a lot of phone calls, inadvertently uncovered some likely hanky-panky with regard to how my company was handing the insurance transition, and now my old insurance (the one that FULLY COVERS my doctor) continues to February 1st, so the surgery is covered!

BTW, in actively pursuing coverage in this manner, and revealing either fraud or incompetence by my company's benefits broker, Human Resources guy, accounting, and CFO, the president of the company THREATENED, TWICE, TO FIRE ME, INCLUDING THE DAY AFTER CHRISTMAS!

Yes, in front of others, he threatened to fire the guy with cancer, the day after Christmas, because I actually dared to try and find a legitimate way whereby I could actually AFFORD CANCER SURGERY.

And later on, I learned (again) what a real POS the HR guy is. He had told me in December that he submitted my FMLA (Family Medical Leave Act) papers "MONTHS" ago, when I was first diagnosed. He told me, in January, just before the surgery, that he'd simply drop off a copy on my desk that afternoon. But he didn't. I had to ask him repeatedly where the paperwork was, and he finally got it to me. IT WAS BRAND NEW. The ink was still wet. He HADN'T submitted it "a few months ago", he only did it when I pushed him to get me a copy. Rather than be threatened with firing again, I DID NOT challenge him on it.

My friends all tell me I should sue...but what would be the point? What could I win, vs what I would certainly lose. There are other ways to deal with that situation.

So, I had the surgery. It went very well. I was walking a little bit that evening, and more the next day. Surgery on a Monday, released on a Tuesday, walking at least 5-1/2 miles a day while home recovering!

The catheter came out about a week later. I've got to tell you, it makes one of the most disgusting sounds on the way out.

I was able to hold my water from the day the catheter was removed. The doctor estimates that his patients will achieve continence in 6-8 weeks. I'm hoping I'm far ahead of the curve! That day, I walked 6 miles, coughed, sneezed, and laughed, and...not a problem. I still have to concentrate when one of those events occurs, just to make sure. But it's become almost second-nature now.

I'm healing well. Very well. The doctor agrees.

The cancer was contained to the prostate. None was found in the seminal vesicles or in the nearby lymph nodes. None was found in the outer "margins" of the prostate. I did have cancer, in both main lobes of the prostate, about 5% by volume, overall. But it was contained, and it was all removed. Final Gleason remained 3+3=6

The two critical nerve bundles were spared. Not 100% for both, but very close. He expects a full recovery there, too! He said to expect a meaningful response there in about 2-3 months.

Saw the surgeon for a "final" appointment Monday, Feb. 25th, and he gave me a big thumb's up! (No, not a DRE! Besides, that's more of a forefinger thing). He pulled some stitches from two of the incisions (the stitches were popping out from the inside; he grabbed them with a pair of forceps, and gave each one a quick...little...TUG! No pain.)

So, I'm good for exercise, swimming, and using a hot-tub! I'm ready to start training for the 42 mile 5-boro bike tour through NYC in May.

He also told me to stop relying on absorbent pads--since I felt I was continent, his fear was that I would become dependent on the pads if I continued to use them as "back-up.". Better to stop now, and make sure that I'm truly continent. So far...I am! I do have to be careful about caffeine and alcohol, though. They're both diuretics, you see...

And the only thing left is recovering erectile function. I have had some "slight" recovery, even when the daily Viagra had worn off. But it's only 6 weeks out from surgery. He feels that the little improvement I've shown there is a harbinger of harder times to come. (I mean that in a good way).

I've had a few late-night (3:00 am) "tumescences", but their mostly good - so far - just for reminiscing. I've yet to have a usable erection, even with the Viagra.

And I am embroiled in a fight with my insurance company to pay for 15 to 34 Viagra (100 mg/month). This is part of my doctor's prescription--Viagra has been shown to improve the recovery of erectile function (see also Use it or Lose It). But my insurance only wants to pay for 6 (and, at that I'm still paying $20, so it's no great deal, anyhow). I did sign up with Pfizer to get their "frequent ****er" program. Every time I buy three rounds of Viagra, I get the 4th round free!

Steve's e-mail address is: boothby171@yahoo.com