Subject: Prostate Cancer Update #2 - January 17, 2008 - Ron Hoffman
This update has the following sections:
1. Introduction
2. Update Number 2 Executive Summary (this will bring you up to date)
3. Update Number 2 Details
Let me know what you think. I appreciate any and all comments. Feel free to forward to friends who may be facing similar decisions. Comments on my current course of action are welcome.
Thanks,
Ron
Ron Hoffman,
ronhoffman@yahoo.com
1. Introduction
Thanks to everyone who has asked about my prostate cancer status, and thanks to everyone who has sent an article or news of a friend who has gone through the decision process. If this is the first update you have seen, you may want to read the first blog (Part 1). Since a biopsy and diagnosis last August I have spent a lot of time looking into this very common disease for men.
2. Update # 2 Executive Summary
Since my first update I visited with three additional doctors and returned to one I had already seen. I have read or scanned a dozen books and read numerous internet blogs and websites. As I have indicated, there is almost too much information out there. And there is a wide range of choices of treatment and each one has strong advocates.
The last three doctors I visited were two surgeons and one radiation oncologist, then a revisit to Dr. Al Barqawi at the University of Colorado (See update # 1).
I continue to feel that there is a tendency to immediately treat any level of prostate cancer. This is driven by the patient’s concern that something needs to be done, and the doctor’s conservatism that the best way to “cure” the cancer is to remove the prostate or eradicate it with radiation, cold or high frequency. What used to be called watchful waiting was considered an alternative only for real old guys who were going to die of something else anyway (most literature mentions age 65 to 70 as the cutoff).
In connection with my visit to Dr. Barqawi, I had another PSA taken. My PSA had gone from 1 something to 2.1 and then to 2.7 which generated the initial suggestion of a biopsy. (These absolute PSA numbers are very low but if the PSA is changing at a rate that would cause it to double in 24 months, a biopsy is indicated [but some say not]). My latest PSA taken in December was back down to 1.97. In addition, I received a letter from the University of Colorado Second Opinion group (Dr. David Crawford). Their review of my biopsy indicated that one of the slides rated at Gleason 6 and 2% of the sample with cancer cells should not be considered as cancer in the opinion of the folks at the University of Colorado.
So, with a low PSA and only one small site of my prostate biopsied as cancerous, I am currently electing “Aggressive Surveillance” as my option - PSA taken every three months and an annual biopsy. If my PSA increases, I will again consider Dr. Barqawi’s Mapping approach (see cons below).
In my humble opinion, the side effects of prostate cancer “cures” are not worth the taking the risk of surgery - based on my PSA and biopsy results. The downside to this decision is that the cancer could be in more locations and could be more aggressive than I think. I did find a research report that indicated that less than 20% of Gleason 6 scores move to Gleason 7. Encouraging, but again not absolute.
So, it is wait and watch for now. This likely means deciding on a treatment at a later date, but it could mean no treatment (statistics are in the details below).
3. Update # 2 Details
This is more information on the doctors I visited since my first update, additional discussion of the mapping technique and Targeted Focal Therapy of Dr. Al Barqawi at the University of Colorado and more details on Active Surveillance.
I visited with Dr. Joel Gordon at the University of Pittsburgh in early December. He is very impressive. He does a full radical prostatectomy, but indicated that there is no need to store blood as he has never lost more than a tiny amount of blood during his surgeries. He was brought to the University by the President of UPMC after the President had prostate surgery with Dr. Gordon at Johns Hopkins. (Recommended by Jim Covert.) Based on my discussions with a friend, Greg Mikkelsen, about how his Doctor, Michael Koch, had indicated that open surgery allows for the ability to touch the nerve sites allowing for a better process to spare the nerves ---I felt that Dr. Gordon would be an excellent surgeon to consider. He did not favor waiting. His logic is that if you are going to eventually have a procedure done, why not do it now and not run the risk of more aggressive cancer later.
The next day, on my way back to Toledo, OH, I stopped in Sandusky OH. To visit with Dr. Phil Engeler, a radiation oncologist. He was very good, but did not give me any sense that radiation is something I should consider.
I visited again with Dr. Al Barqawi to discuss his mapping and Targeted Focal Therapy. At this point, my thinking was that I would participate in this process in March following my 10-K work at Dana Corporation in Toledo. As I discussed in Update #1, the mapping would determine if there are more areas of the prostate with cancer cells, and if the areas are not close to vital organs, Targeted Focal Therapy could be used to kill the cancerous areas without destroying the entire prostate. More discussion on this below - after a summary of my visit with Dr. Michael Cook at Indiana University in Indianapolis.
Dr. Barqawi was encouraging me to get the mapping done sooner rather than later. Janice asked if another PSA test would be helpful. Since it had been 5 months, Dr. Barqawi said yes. We kind of agreed that if the PSA had gone up, we would do the mapping sooner. If not, we could wait until March. The 1.97 result obviously met the criteria for deferring until March.
I also put in a call to a former associate at American Hospital Supply Corporation, Craig Davenport. Craig was CEO of Endocare, one of the leading Cryotherapy companies (he recently left to work for a Water Street Capital venture). Craig returned my call and said I have to see Dr. David Crawford and Dr. Al Barqawi. I told him, I had already seen them, and he indicated, you cannot be in better hands.
Last visit was to Indianapolis to see Dr. Michael Koch at Indiana University (and to visit with fraternity brother Keith Phelps and catch up on the 40 years since we had spent much time together). Dr. Koch was originally the first choice as a doctor and is probably the best choice as well, if I chose surgery. Gregg Mikkelsen had raved about Koch at the start of my research, and, based on Greg’s recommendation, I had scheduled the visit with Dr. Koch. Also, I had been impressed by Greg Mikkelsen’s explanation that the open surgery where touch was important was Dr. Koch method (but read on). Greg had convinced me that is an excellent choice for open surgery.
Interestingly and very positively, Dr. Koch has become a tremendous advocate of the da Vinci robotic surgery. He admitted to uncertainty about robotics initially, but after learning how the system works, he believes that the da Vinci robotic process is superior to open surgery. The magnification provided by the equipment, the sensitivity of the robotic arms and the minimally invasive nature of the surgery make it the absolute best choice for prostate surgery. He believes that many of the better surgeons will move to robotics. (David Crawford at Colorado has done so – although I am not sure he uses da Vinci – may just be a laparoscopic approach.
I asked Dr. Koch about the mapping technique used by Dr. Barqawi. He indicated that he knew of the technique and had been asked to participate in a discussion of the technique at an upcoming Oncology meeting. He made two comments that did lessen my interest in the mapping technique. The first was that he felt the large number of needles used for the mapping could scar the prostate and make surgery more difficult. The second point he made is that cryotherapy does not have any definitive studies for use for prostate cancer and is considered experimental. In spite of these concerns, I remain interested in Dr. Barqawi’s approach.
Johns Hopkins has an Aggressive Surveillance program. Here is their criteria for who should consider it:
Life expectancy – less than 15 years (older than 65) ----- This is the only one I fail
Palpability – non palpable (Stage T2 or lower) ----- OK (T1C)
Gleason (6 or less) -- [I have never heard of a five] ----- OK (Gleason 6 – 3+3)
Number of cancerous sites – 2 or less ----- OK (one)
Cancer at sites (less than 50%) ----- OK (less than 5%)
PSA density (0.1 or less) ----- OK (2.7 nl divided by 40 grams
equals .06 )
PSA - 4 or less (derived from density and 40 grams) ----- OK (1.97)
Free PSA 10% or greater ----- Not tested – next time
PSA Velocity – not a good indicator per several studies ----- With drop to 2 – my velocity
is low
Looks like the only problem is I am too young (which should be obvious to all of you).
There is a 30% chance that treatment will be needed in the future, and of that 30%, 25% will have incurable cancer (but still treatable). So there is an 7.5% chance (25% times 30%) of a more serious problem – but there is also a chance of recurrence if you proceed with aggressive treatment.
I am waiting for now.
Ron Hoffman
ronhoffman@yahoo.com
Wednesday, February 4, 2009
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
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
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