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Bill B lives with his wife Rosemarie in the United States of America. He was 65 when he was diagnosed on 5 May 2004. His initial PSA was 5.7 ng/ml but he was not told his Gleason Score or Staging although it seems he would have been staged T1c and a second biopsy showed a Gleason Score of 6. Here is his story:

 

After consistently low yearly PSA ratings of 2 or so, this year it had jumped to 5.7 ng/ml. My urologist suggested a course of antibiotics and anti-inflaminatories to reduce possibility of outside influences affecting the count, then tested again and got a psa of 5.00 ng/ml. We then did a 12 needle biopsy. The local lab couldn't agree if the cells were cancerous, and sent them to John Hopkins. The answer came back that there were cancerous cells. I am to meet with the urologist next week to discuss options. He recommends surgery right away, which he says can spare the nerves which affect erection and continence.

I have made up a list of questions for him concerning what my Gleason rating is, the T value of the tumor, the location in the Prostrate, as well as his experience level in surgery of this type and success rate.

Have read a lot and plan to read a lot more. Found Andy Grove's article to be exceptional. Plan to get multiple opinions before making up my mind.

This is not an easy process, tendency to turn it into a unemotional research project in order to distract myself from the emotional aspects.

UPDATED

17 November 2004

Finally am getting around to updating my story.

Since my first entry I have been doing a lot of reading, mostly on the internet. The Yananow site has been invaluable and a source of comfort. When I informed my original urologist, who had wanted to immediately perform a pubic radical Prostatectomy that my reading had pretty much convinced me that laparoscopic was the way to go, he suggested Dr. Timothy Wilson at the City of Hope.

I saw Dr. Wilson, who reviewed the charts and suggested that I should have a prostatectomy, and that he could perform the operation. He has done hundreds and considered one of the tops in the field. Although my original Urologist and my GP had suggested that the laparoscopic procedure could take many hours and had serious risks as compared to the more conventional open surgery, Dr. Wilson said that the typical LRP only took two to three hours, which is comparable to open surgery. Recovery is quicker according to everything I read.

I asked him why I should rush into it, since my 12 point biopsy only detected a few cancerous cells in one needle. He said that the prime reason would be that the older I got, the more difficult the recovery would be. He said that waiting a year or two probably did not increase my risk significantly. I came away from this consultation firmly convinced that if I have the operation that I would ask Dr. Wilson to do the procedure, but also to do more investigation to see if it was really necessary.

I had read on Yananow that there was a program at John Hopkins involving watchful waiting. It is run by a Dr. Carter, who seems to be one of the very top men in the field. I applied and spoke to Dr. Carter, and made an appointment to go back to Baltimore for a biopsy and further qualifying interviews in three weeks time. The program calls for an annual biopsy, I believe 30 points or so, which made me a bit nervous. I don't like the idea of all these puncture wounds in that organ, worry that this would just put more cancel cells in my blood stream, an idea which has some support in the medical community.

Terry Herbert suggested that I might want to consider a Doppler trans-rectal ultrasound examination. He suggested a Dr. Fred Lee, in Michigan. I found that an associate of his, a Dr. Duke Bahn in Ventura CA, (much closer) apparently equally as skilled, and went to see him. Apparently the theory of the Doppler ultrasound revolves around the ability to detect blood flow to areas of the prostate using sound. Since cancerous tumors require more blood than healthy tissues, this allows for the mapping of problem areas in the prostate and for guided biopsies of just those areas, in contrast to the "blind" or "Easter Egg" methodology commonly used.

Dr. Bahn showed me on the scope that there were some anomalies in the area where the original biopsies had found the suspicious cells, and he did a four point biopsy of this area. He also drew blood for a PSA test. He called me a few days later with some "good news/bad news". The biopsies were clear, but my PSA was up to 7.3 ng/ml. He thought that my PSA might be high due to the earlier biopsy and suggested that I wait 90 days and have it done again. If it is still high, or higher, I might want to consider treatment. .

My PSA history is

Feb 2002 3.1 ng/ml

Jan 2003 2.9 ng/ml

Mar 2004 5.7 ng/ml

May 2004 5.0 ng/ml

Sept 2004 7.3 ng/ml

My Gleason score was 6, and nothing was amiss on the DRE.

While PSA is being debunked as a reason to have surgery (only biopsies count), my GP makes the point that while a high PSA might not mean cancer, a high velocity probably does.

Will hopefully have good news in December when I will have my PSA results.

UPDATED

1 January 2005

A brief note from Bill, who is travelling the world to say:

My PSA dropped from 7.3 ng/ml to 5.8 ng/ml, so certainly for now, you can put me down as watchful waiting, or whatever it's called. Will report in more detail later.

 

UPDATED

13 May 2005

 

Had another PSA done, back up to 7.3 ng/ml, with 16.44% free. I had had a week of mildly painful aches in the waterworks, and some aching in the prostate area, so think (hope) an infection or prostatitis might be responsible for the increase. Will go to a urologist to see what he thinks.

UPDATED

8 October 2005

 

I saw my local Urologist last week. The PSA was 5.9 ng/ml, so holding relatively steady, and the free psa was 16%. The urologist counsels waiting, he says there is a very good chance it will never bother me. (exactly what I wanted to hear!).

UPDATED

May 2006

 

Saw my Urologist after 7 months since the last visit. Good news is that my PSA is holding steady at 5.3 ng/ml and he thinks PC is not an issue. This after two years ago my first urologist pushing me hard to have a pubic prostatectomy!

Bad news is that I am not emptying my bladder, normally retaining 200cc after urinating. He wants me back in to test to see if it is a blockage problem (BPH), or if my bladder has simply "given up" and lost elasticity.

Kind of scared me. Anyone out there had a similiar problem?

UPDATED

August 2006

 

My urologist performed some tests on my bladder (not particularly pleasant but not painful), and concluded that I needed a Green Laser VLAP (Visual Laser Ablation of the Prostate) in order to relieve symptoms of BPH (Benign Prostate Hyperplasia) , primarily the typical urgency, frequency and not emptying my bladder problems. He proposed that he also do a biopsy at the same time since I would be under general anesthesia anyway.

Had the VLAP on June 27, which went well, had to wear the infamous Foley catheter for three days, which was not pleasant, but not as bad as I had imagined. By the way, anyone getting a Foley should make sure that when they send you home they give you an overnight bag as well as the small leg bag, otherwise you won't get any sleep that night! I had to stay awake to empty it every two hours.

Got the results of my biopsy on the 30th, and there WAS NO EVIDENCE OF CANCER!! according to the urologist. My urologist is Dr. Brad Wolfson, and if you are anywhere near Palm Springs and need an objective (not slice and dice) opinion, I highly recommend him. He was the first urologist I have seen who didn't pull a scalpel out of his breast pocket when I walked in the door!

I am to see him again in three months, but now he is basically treating urinary problems, and, although we will continue tri-monthly PSA tests, the PC thing has receded to the background.

 

UPDATED

July 2007

 

I don't have much to report, went to my urologist again for my six month checkup, and was pleased to find that my PSA has dropped to 4.3 ng/ml, the lowest it has been in several years.

He still seems to feel that I am essentially cancer free, or at least that it is so small as to be (hopefully) insignificant.

Still treating me for incomplete emptying of my bladder, just so my visits won't be a waste, I guess.

 

UPDATED

August 2008

 

I am continuing with daily doses of Alfusen and Fincar, and in February my PSA had dropped to 3.7. My urologist has me on a every six month schedule, so will be seeing him this Fall. So far there seems to be no sign of cancer, although have not had a biopsy since year before last.

My main problem is still incomplete emptying of my bladder, but that is sympthom free, so I feel in good health.

 

UPDATED

November 2009

 

 

Not much to report. My urologist has me on a yearly checkup, taking Finasteride 5mg and alfuzosin hydrochloride 10mg daily.

As reported earler, after the first biopsy which showed a few suspicious cells on one needle, subsequent ones show no cancer. My urologist seems to feel that I do not have any threatening cancer, and seems content to just do a yearly checkup.

I am having my GP do a PSA every six months, last one was 2.5, down from an earlier 8. This after the first two urologists were urging me to undergo a radical prostatectomy several years ago!

Bill's e-mail address is: wbayles@gmail.com