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Reed A. lives in New Mexico, USA. He was 67 when he was diagnosed in March, 2009. His initial PSA was 13.6 ng/ml, his Gleason Score was 8 and he was staged T3. His choice of treatment was Hormone + robotically assisted radical prostatectomy. Here is his story.

I've been visiting this wonderful site since my diagnosis and now feel that I have a story of my own to pass along.

Needless to say it was a severe shock to get the diagnosis of "a very aggressive cancer with probable involvement beyond the prostate." I had an 8 to 10-year history of BPH (Benign Prostate Hyperplasia) and PSA readings that swung from 2 to 5 and in between. When I had a PSA of 6 in 2004, I took advantage of my health coverage just before retiring to get a biopsy which was negative. It was the skyrocket rise from one year to the next in 2008-2009 that triggered the next biopsy and the diagnosis. My advice after all this, is don't be lulled by PSA readings that might be attributable to BPH or prostatitis -- stay on top of the situation and maybe have the PSA checked more often than usual.

Once I had my diagnosis, the urologist recommended hormone therapy which I began in May 2009 with a 4-month Lupron injection. The side effects are miserable at times, but tolerable. It remains to be seen how well I can recovery from this "chemical castration."

I was lucky enough to be near (well, 6 hours away) Mayo Clinic in Phoenix where I had a radical prostatectomy with the Da Vinci process on June 1. They sampled lymph nodes and "cleared the margins" during surgery. Three months later, I am totally recovered from the "minimally invasive surgery," and working on incontinence and psychological/physical effects of the hormone regimen. My PSA level at three months post-op is "undetectable."

Nevertheless, I am grateful for the advanced technique of robot-assisted surgery and the skills of the surgeons who did the job with their video screen and joy sticks! I would recommend this technology to anyone for whom it is available and considered an option.

 

UPDATED

January 2010

 

 

At six months from surgery, my PSA levels have been undetectable at both of my 3-month visits to the Mayo clinic in Arizona. I am almost fully continent now, but have occasional small accidents due to physical strain (lifting, standing up from a squat or even getting out of a vehicle without being prepared), especially late in the day. One of the things I'd recommend to men who are having trouble regaining continence is to walk regularly and as much and as vigorously as you can, and simply to stand (rather than sit) as much as you can during the day. This seems to condition those muscles that are important to holding the urine. I also perform and teach tai chi chuan which puts steady demand on the legs, waist and abdomen, and has really helped with the incontinence problems. I truly think that exercise is one of the main keys to recovery of function. After years of BPH and with my prostate long gone, I have the best urine flow I've had for a decade or more! I'm also enjoying good coffee which I had completely given up for years trying to be kind to my suffering prostate.

As for the Lupron therapy, I still (after 8 months) have episodes of deep fatigue and despondency. I try to combat this with naps and by making an effort to work out to some extent every day. The physical activity really boosts my mood and outlook, and it gives me the satisfaction of playing a part in my own recovery. Nevertheless, I still am carrying 15 pounds of weight I would like to lose. Not very successful in that endeavor so far. Muscle tone is poor as well. I lift free weights in modest amounts but can't seem to regain/maintain any kind of muscle bulk or tone. Maybe this is all too soon to hope for. I'll see my PCP soon and get a complete lab test to see whether any testosterone has returned to my system. I have next to no sex drive and after six months after surgery I can't tell whether I'll have erections or not. This is perhaps due to the "double blow" of the Lupron and the fact that my surgeon (due to the aggressive nature of my malignancies) could not promise a " nerve sparing" approach to the prostatectomy.

So at this stage, I'm happy with the results of the surgery (no sign of remaining cancer), but confused about how soon to expect recovery of sexual function (if at all and to what extent) and overall physical well-being, such as weight loss, energy and muscle mass and tone. More later after my next trip to Mayo-Scottsdale. That will be at a time when I can take in a couple of spring training baseball games in order to boost my morale!

 

UPDATED

March 2011

 

 

Today, when I got the "nudge" to up-date my story, I had coincidentally just returned from a visit to my GP who reported that my fourth PSA panel post-surgery showed PSA to be undetectable, same as the first three tests. Needless to say, I'm delighted at that good news.

I am what I have come to regard as fully continent - that is, after lots of Kegling and working out to regain abdominal strength, I only have minor leakage when straining to lift something, or when I'm tired and have been on my feet in the shop for several hours without relief.

I still can't seem to shed the extra 8-10 pounds I put on as the result of Lupron injection prior to surgery. I am active, don't eat a lot, but can't seem to get rid of those pounds -- maybe aging has as much to do with this as anything else!?

Now for the less good news: I was told that due to the size of the prostate, the speed of PSA doubling (aggressive tumor) and the fair chance that the tumor had exited the prostate (proved not to be true), there would be no chance to do nerve-sparing approach to prostatectomy. OK, well at least he was honest. Result is that 17 months after surgery, I cannot muster any kind of an erection and my libido is pretty low too. I have an incredible partner in my wife and we've promised each other to work on physical intimacy in any way that remains to us under the circumstances.

I have considered trying the vacuum pump, but somehow just can't get the nerve up to do it -- probably fear of failure, and then what? Any advice or counsel from friends out there about the pump would be appreciated. [There are many men on the site who have used vacuum pumps or VEDs successfully. Using the Site Search Engine will provide 10 or 20 men's names. Another approach is to join a Forum where such matters are openly discussed - see Mailing Lists.]

Other than that, life is good and its quality is enough for me to be enjoying every moment I can! Best to all who might read this, and hopefully some of it will be of help to someone.

Reed!

Reed's e-mail address is: reedand@hughes.net