Let's Review My Prosate Cancer = Part 1

Here is my initial message to friends and family regarding my prostate cancer diagnosis:

From: Ron Hoffman
Subject: Prostate Cancer Update #1 - 11/17/08

First of all, thanks for all the thoughts and recommendations and names of people to talk to that you have shared. I have talked with many folks and they all have a wide range of thoughts and recommendations. I sincerely appreciate your comments and concerns.

I am going to do an “Executive Summary” for those of you who want the short version, then go into some detail for the benefit of others who have had or who are facing decisions on what to do. You may want to skip the “Details.”

EXECUTIVE SUMMARY

I got the results of my biopsy in Mid-August. In late September, I met with my Urologist and learned that, in his opinion, either surgery or radiation could “cure” (nothing is absolute) my cancer.

My condition is early stage. (My stage is T1C, Gleason of 6(3+3) and a PSA of 2.7.) One of the doctors I met with last week (I talked to 4 – two surgeons, one researcher, and one radiation oncologist) drew this chart where I am at “X”:

RISK LOW MEDIUM HIGH

Cancer Stage X
(how advanced) T1 T2 T3-T4

Gleason Score X
(tumor severity) 6 7-8 9-10

PSA X
(antigen measure) 4-10 10-20 20+



His message was “there is no hurry to make a decision on a course of action.” What used to be called “watchful waiting” is now called “Aggressive Observation or Active Surveilance.” In a low risk situation, and given the side effects of incontinence and impotence that are possible with surgery and radiation, you can maintain a better quality of life for some period before deciding on a course of action.

I am currently continuing to meet with doctors (two more surgeons and one more radiation oncologist) over the next three weeks, but my take so far is that I do not need to do anything immediately.

I am also pursuing the possibility of a research protocol at the University of Colorado. Dr. Al Barqawi ( www.alprostate.com ) has set up a protocol to “map” the location of the tumors in the prostate by biopsying 40 – 100 sites in the prostate to identify exactly where the tumors are. Then, IF the tumors are in one or two specific spots, he uses Cryotherapy to freeze ONLY those locations. My current thinking is to pursue this approach for two reasons:

1. It will help to determine if there are more tumors than the two small early stage sites identified in the 12 site biopsy I already received.

2. If the tumors are minimal in only a couple of sites, I could qualify for the Target therapy he uses. (About 40% qualify).

So, in short, I am in an Aggressive Observation mode and considering the Target Focal Therapy protocol being developed at the University of Colorado.

I need to add that each person’s situation is DIFFERENT and that another person in my situation could make a TOTALLY different decision, but perhaps my thinking will be helpful to others.

And now…..

THE DETAILS (This really qualifies as TOO MUCH INFORMATION, so feel free to skip)

I met with three doctors at the University of Colorado last Monday (11/10). I had scheduled a meeting with David Crawford. He was the first recommendation I had received. Michael Ballenger had come up with his name from three different sources he contacted. I initially did not schedule an appointment with him as I had heard from another individual that he was pretty cold, and when I asked my urologist about him, he said that he has a “different” personality. Janice and I found him to be very frank and business-like – not a warm personality but very competent, very dedicated and clearly an expert in his field (CV is 93 pages). His message was that there is no need for immediate action. He also indicated that with his laparoscopic approach to a prostatectomy, there is no blood loss.

He asked me to see his associate, Dr. Al Barqawi, about a new protocol. This is the Target Focal Therapy covered above. We were able to see him immediately after the Crawford appointment. He showed us how he maps a grid of every five centimeters of the prostrate to identify exactly where the tumors are located. Then, IF the tumors are not in too many sites, AND not too close to critical organs, he will do Targeted Focal Therapy using Cryogenics to freeze the tumors and not take out the entire prostate. Only about 40% of the patients he maps qualify for the Targeted Focal Therapy (TFT) as the mapping sometimes identifies more cancer (indicating more aggressive treatment). My sense is that this is a way of knowing more about where I stand. TFT is an approach that has the potential to remove tumors from the prostate without destroying the entire prostate and surrounding tissue. The analogy is that lumpectomies became a great alternative several years ago versus a total mastectomy. (For you experts the weakness in this argument is that breast cancer may be more localized than prostate cancer). This is a protocol that does not destroy the entire prostate and may be able to avoid critical nerves and organs that would be damaged with total radiation or a radical prostatectomy.

We also saw Dr. Shandra Wilson who had been recommended by my Urologist. She is an excellent surgeon who performs an open prostatectomy. Her message was also that I should consider taking my time.

Later in the week we saw a radiation oncologist at TUCC (The Urology Center of Colorado – where my Urologist practices). He discussed radiation therapy, but he was the individual who drew the RISK chart above, and again gave the message that Aggressive Observation is a reasonable consideration at this time. I had researched some of the newest radiation machines (including Tomotherapy recommended by Sam Leno and Calypso recommends by others). The TUCC doctor plants gold seeds in the prostate to align the individual for radiation treatments. This works, but the newer systems maintain real time positioning of the prostate for more accurate radiation.

The problem with radiation or surgery is that there is a pretty high percentage that there will be some level of incontinence or impotence. Here is one of Dr. Barqawi’s slides.

Side Effects of Treatment

Treatment Side Effect Frequency
Radical -Erectile dysfunction 20-70%
prostatectomy -Urinary Incontinence 15-50%

External beam -Erectile dysfunction 20-45%
radiation therapy -Urinary Incontinence 2-16%

Androgen depriv- -Erectile dysfunction 20-70%
ation therapy -Hot flashes 50-60%

Watchful waiting -Erectile dysfunction 30%


And, here is really TOO MUCH INFORMATION –

Impotence is really only erectile dysfunction. You can still have an orgasm, just not enough there for penetration. Of course the four P’s are available to assist you – Pills (Viagra and others), Pumps (suction), a Prick (injection directly to the penis) and Pins (insertion of a permanent pin in the penis). Very workable, but not something to look forward to. Incontinence ranges from dribbling to diapers. In short, the percentages above include some conditions that are pretty tolerable – making the chart above a little less ominous.

Last Tuesday, I attended the University of Colorado prostate cancer support group. It turned out that the speaker was Dr. Barqawi. In addition, a local News anchor, Mike Landess, also spoke. He is one of the 200 or so patients who have utilized Dr. Barqawi’s protocol. He has done a series on his prostate cancer journey and turned it into a ½ hour program summarizing his course of action. The stories can be accessed at http://www.thedenverchannel.com/index.html Mike’s blog is on the bottom of the left hand column of this site. A DVD of his story is also available for free from the Prostate Cancer Education Council. http://www.pcaw.com/events/landess/

Next up are a visit with Dr. Joel Nelson at the University of Pittsburgh Medical Center. Nelson is out of Johns Hopkins and was referred by Jim Covert. Also, the CEO of Tomotherapy (Sam Leno referral – Sam is on the Board) contacted a couple of medical schools for a good radiation oncologist near Toledo, OH where I am working. His University of Minnesota contact said that “one of their best” was practicing in Sandusky, OH (about an hour from Toledo), and I will see him next week. Unfortunately the Cedar Point roller coasters are shut down for the season. And in early December, I see Dr. Michael Koch at the University of Indiana in Indianapolis. Highly recommended by Greg Mikkelson who used Dr. Koch with great results.

A friend that I met through my daughter is CEO of the company that built the accelerator for Proton Therapy at MD Anderson in Houston. He, of course, says I should get myself down to Houston for Proton therapy. Lots of good press on Proton Therapy, possibly a more accurate and less damaging therapy for surrounding cells. If radiation is a final choice, I will definitely look at Proton therapy. Some pretty strong recommendations for this therapy from ProtonBob (Google him) and I have read his book.

That is probably enough commentary for the first installation.

Thanks again for all of your comments and recommendations. Keep them coming. I would also be glad to answer questions from anyone you know who is in the process of making decisions about prostate cancer.

Comments are welcome. I have found the comments from all of you to be useful and appreciated. Please let me know your thoughts.

Ron


Ron Hoffman
ronhoffman@yahoo.com