Walnut

Subscribe to RSS Feed for recent updates
Subscribe to RSS Feed for recent updates

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

SURVIVOR STORIES  :  DISCUSSION FORUM  :  WIVES & PARTNERS  :  TELL YOUR STORY  :  UPDATE YOUR STORY  :  DONATIONS  :  TROOP-C

YANA HOME PAGE  :  DON'T PANIC  :  GOOD NEWS!  :  DIAGNOSIS  :  SURVIVING  :  TREATMENT CHOICES  :  RESOURCES  :  ABOUT US  :  MAIL US

 

  DIAMOND  
This is his Country or State Flag Member's Photo

Sam Wells and Lynne live in California, USA. He was 63 when he was diagnosed in December, 2002. His initial PSA was 3.80 ng/ml, his Gleason Score was 6, and he was staged T1c. His initial treatment choice was Surgery (Retropubic Prostatectomy) and his current treatment choice is None. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

My PSA jumped from the year before from 1.8 ng/ml to 5.6 ng/ml in August 2002. Over the next two months it dropped to 3.8 ng/ml and the Free PSA was 7% which indicates >50% odds that I had Prostate Cancer.

My Urologist's reaction was that I was being a hypochondriac since the PSA was under 4.0 ng/ml and the Free PSA didn't count since it was only statistically significant if the total PSA was over 4.0 ng/ml. He ignored the fact my brother also had PCa and clearly doesn't understand statistics.

After the Biopsy proved I had PCa I evaluated all the options for local treatment and the doctors skill. I settled on Surgery as it fit my personality to know within weeks if the tumor was contained. That was 3 1/2 years ago and my PSA has stayed at 0.004 ng/ml at last measiure. The PSA jumped up to 0.025 ng/ml in September 2005 and then down over the next 6 months to 0.004 where it has remained.

I was however one of the unfortunate few who ended up incontinent. The Artifical Sphincter was installed after about 1 1/2 years following surgery and has made me whole again.

UPDATED

October 2006

I have been exercizing 4 to 5 days per week for both cardio and strength. While the strange wanderings of the Ultra sensative PSA have once again landed on zero (Oct 19, 2006) other failing parts have visited me since my first posting. I was treated for Atrial Flutter and am hoping for some treatment for what appears to be the early or mid stage of Age Related Macular Degeneration. Concluded that no one is ever out of the woods.

UPDATED

April 2008

Sam mailed me to say he had sent in an update, but I seem to have mislaid it and have asked him to re-send. He is well although he worries a little about some small variances in his ultra-sensitive PSA.

He says : "2 1/2 years after my RP my PSA went from 0.00 to 0.026 for a few months and then wandered down to 0.00 again. At almost 5 years out it went up to 0.01, then to 0.02 for four months before dropping the other day to 0.01 again.

These meanderings caused me untold hours of anxiety and would have been avoided and the results would be the same if I stuck with the <0.1 level of measurement.

I've become a PSA junkie. I rationalize however, that it's better to use ultrasensative to spot an upward trend beyond 0.05 early so I can begin lining up an oncologist.

UPDATED

March 2009

It has been 6 years from Feb 2003 since my Radical Prostatectomy. My PSA remained at 0.00 for the first two years and then began to bounce up and down between 0.00 adn 0.02 for years three and four. It then climbed up to 0.02 where it has remained for the last two years (years 5 and 6) until this past month when it moved to 0.04.

Given the OFFICIAL definition of Bio Chemical recurrence is 0.2, I am a long way away from that, however, the PSA is moving in that direction however slowly which causes me anxiety. [Although Sam says that a PSA reading of 0.20 ng/ml is biochemical evidence of failure, it must be said that there is no agreement on this issue. The study Comparative Effectiveness of Therapies for Clinically Localized Prostate Cancer says in part that one of the blocks in obtaining comparative data was that "There was not standardized reporting of biochemical outcomes, with more than 200 definitions of "biochemical no evidence of disease (bNED)". Sam has chosen just one of those definitions.] I don't like to sit and watch the PSA reach the stage of official recurrence without having a plan to handle it. To that end my wife and I met with Dr. Peter Carroll of the University of California San Francisco (UCSF) Med School on February 28, 2009 to help me understand what is going on and devise a plan of treatment if needed.

Step one was to re-examine the slides from the original pathology. The review by UCSF showed that no cancer cells were present in the margin but benign prostate cells/tissue was present in the margin (according to Dr. Carroll most labs only report cancer cells in the margin and not benign prostate cells). It was therefore assumed that some benign prostate tissue may have been left outside of the margin.

A sonagram by Dr. Shinohara, also of UCSF, identified a small object or particle that they believed may be prostate tissue. This object has a small dimension of 3x3x7mm.

Dr. Carroll's conclusion was:

1. The low PSA numbers I am seeing may be due to the cells in the object which could be either benign or cancerous.

2. Because of the margins, there is a possibility that these cells are benign prostate cells He assured me that benign cells can grow and emit more PSA without the prostate gland itself. (UCSF is doing research on benign cells following treatment and he said that most of the questions about them he can answer a year from now)

3. If the there are cancer cells present he believed there were high odds that they are a low grade variety rather then a high grade or aggressive type since

a. The growth of the PSA in the six years since surgery has been miniscule,

b. While the Path report had a Gleason grade of 3+4, the "4" only represented about 10% of the cancerous cells (also discovered in the re-review of the slides)..thus not dominant as they would be if they approached the quantity of the Gleason "3" cancer cells..

4. His recommendation was to measure the PSA every three months and unless it was "markedly aggressive" do nothing AND in a year have Dr. Shinoara re-assess any change in dimension of the object…which might indicate it is cancerous and aggressive. He advised that even if the object was cancerous unless it was of the high grade variety he would avoid further treatment either radiation or hormone given the risk of side effects vs the return.

In effect he was recommending a post RP version of Active Surveillance.

He went on to say that if I was experiencing anxiety about this plan and wished to discover if the object was cancerous or benign he would be willing to try a biopsy. He cautioned, however, that there is no guarantee of a biopsy hitting the object given its small size. Further IF a biopsy did hit the object and discovered its cells were cancerous he advised against radiation unless the cells were of a high grade variety (again given the apparent indolent pace of what ever is there over the last 6 years vs. side effects).

He assured me that I would not die of prostate cancer and very politely suggested that I stop obsessing over such a low level of PSA. I don't know how he is so certain of what my death will not be caused by and more importantly WHEN, however under the glare of my wife (for asking an opinion from an expert in the world of Prostate Cancer and then arguing with him) I retreated. I do plan to monitor my situation as prescribed by Dr. Carroll.

Regarding further treatment, I am tempted to send Dr. Carroll a note with a quote a wise man I know who said: "The only person who wants to be a 90 year old is an 89 year old".

Stay tuned!!

UPDATED

June 2009

Good news, my PSA measured 0.01 at the end of May, which is a drop from the 0.04 three months earlier. Once again, had I used a lab that would have reported both of my results as less than 0.1 my anxiety level prior to the last test would have been nil. [Sam's anxiety is a common feature for men using the ultra-sensitive test as it is subject to variances].

UPDATED

April 2010

On February 21 when I drew blood for my periodic PSA it was 7 years to the day of my surgery. While my PSA is still oscillating between 0.0 and 0.04 I was happy it wasn't any higher. So far the UCSF Doc, Peter Carroll's prediction from last year is holding true. He was convinced that a very small piece of prostate tissue remains and is generating PSA. Will watch it closely. Hopefully it won't get close to 0.20, the boundary of biochemical failure after surgery, at least with my local urologists.

UPDATED

March 2011

It's been eight years to the day, February 21, 2003, that I had surgery. I drew blood on that same day this year to get my PSA. It was 0.03 ng/ml.

The PSA movement between 0.05 and 0.01 while at a very low level still gives me the willy's. The small piece of prostate tissue still inside of me appears to be benign. I will check my PSA forever in case whatever triggered the prostate gland cells to become cancerous may do the same to the few benign cells still inside of me.

Regards Sam.

UPDATED

July 2011

It has been 8+ years from Feb 2003 since my Radical Prostatectomy. My PSA remained at 0.00 for the first two years and then began to bounce up and down between 0.00 and 0.02 for years three and four. It then bounced between 0.01 and 0.05 where it remained through years 5 through 8.

Stay tuned!!

UPDATED

July 2012

PSA 0.02 in February 2012, 9 years from surgery

UPDATED

November 2013

This past August, at 10-1/2 years since my prostate was removed, my PSA was checked and it remained, as predicted, at 0.02. Have finally accepted that I will not die from Prostate Cancer. On to other disease.

Call or write me if any questions.

Sam's e-mail address is: samwells AT yahoo.com (replace "AT" with "@")

NOTE: Sam has not updated his story for more than 15 months, so you may not receive any response from him.


RETURN TO INDEX : RETURN TO HOME PAGE LINKS