Following my diagnosis of recurrent cancer, a few folks have asked,"If you had it to do over, would you choose proton therapy?" My answer is an unqualified, unmitigated, "YES." My initial research indicated several available options demonstrated a high degree of success. Proton therapy and surgery appeared to be more effective when compared to brachytherapy, cryosurgery and various types of photon therapy. No less effective than the other options proton therapy stood out because of fewer, less severe side effects. A high success rate combined with minimal side effects appealed to me then and strikes me as being equally persuasive to this day.
A few weeks ago an internet friend informed me that of the several thousand prostate cancer patients treated at UFPTI since opening in 2006, I am one of three individuals whose proton therapy proved unsuccessful. UFPTI issued a press release this November which contained the following stunning success-ratio statistic:
"Five year progression free survival rate of 99 percent in low-intermediate-risk prostate cancer patients."
If only I could locate an equally effective means of treating my recurrent cancer.
If I made a mistake along the way it was not securing a second opinion on my original biopsy as recommended by Marckini et. al. Although, before initiating treatment, UFPTI confirmed my original Gleason score as being 7(4+3). At a much later date using the same set of slides Mayo Clinic concluded my score was actually 8(4+4).The Mayo clinician who called this to my attention speculated that had UFPTI concluded likewise my radiation may have been preceded by one or more doses of Lupron which may have prevented the recurrence.
Why the soul searching and hand wringing at this point you might wonder? Well this exercise represents my attempt to set the record straight. In so doing I hope to enable others who follow in my footsteps to make a good decision for themselves. A 2012 Christmas gift? Perhaps.
Tuesday, December 11, 2012
Saturday, December 1, 2012
Mainstream Oncologist #2
Dr Trewkare may not be infallible, but I suspect he is about as good as they come. Even though we had seen him only three times over a four year period, he greeted my wife and me on a first name basis as if we were old family friends. Apparently Dr Trewkare reviewed most of the medical information I had submitted prior to our appointment. We quickly reviewed the treatment plans that I had considered and rejected including brachytherapy, cryotherapy, HIFU and surgery. It seemed evident he agreed I had not overlooked the ideal option. He visibly shook his head ever so slightly at the mention of HIFU.
At this point I asked him about the advisability of the Casodex plan. "Who recommended that" he wanted to know? "An oncologist by the name of Dr Cy Fer," I answered. "I know him," he replied, "he irritates me every time I see him at one of our meetings, and now it is all the more obvious that he DOES NOT KEEP UP WITH THE LITERATURE." It was fairly apparent that this is about as bad as it gets in the medical community in general and the oncological profession in particular.
"Your PSA remains fairly low," Dr Trewkare returned to the task at hand, " and in my opinion its rate of ascent is not particularly worrisome." ( Although this observation runs counter to my perception of my predicament, it directlly parallels Dr Gud E. Nuff's judgement precisely). "We should begin to think in terms of treatment when your PSA reaches 10," he continued. "When we do treat we should consider traditional hormone therapy on an intermittant basis. Please monitor your PSA, provide me with the results, and when you return from Texas in six months come in and see me." So goes the current plan
At this point I asked him about the advisability of the Casodex plan. "Who recommended that" he wanted to know? "An oncologist by the name of Dr Cy Fer," I answered. "I know him," he replied, "he irritates me every time I see him at one of our meetings, and now it is all the more obvious that he DOES NOT KEEP UP WITH THE LITERATURE." It was fairly apparent that this is about as bad as it gets in the medical community in general and the oncological profession in particular.
"Your PSA remains fairly low," Dr Trewkare returned to the task at hand, " and in my opinion its rate of ascent is not particularly worrisome." ( Although this observation runs counter to my perception of my predicament, it directlly parallels Dr Gud E. Nuff's judgement precisely). "We should begin to think in terms of treatment when your PSA reaches 10," he continued. "When we do treat we should consider traditional hormone therapy on an intermittant basis. Please monitor your PSA, provide me with the results, and when you return from Texas in six months come in and see me." So goes the current plan
Thursday, November 29, 2012
Two Trusted Advisors Weigh In
True to form I began to research shortly after leaving Dr Cy Fer's office. My initial effort involved googling Casodex. This inquiry produced a dozen or so references with lists of side effects ranging in variety from diarrhea to constitpation and in severity from extreme tiredness to impotence to growth of other tumors and/or to liver disease which in rare instances caused death.
All of us who own a TV know about the drug industry's kitchen sink approach to side effects, but the stark contrast between Dr Fer's side effect prognostication and the internet listings, in my judgement, sounded the alarm with great clarity.
For additional perspective I contacted two of my trusted advisors. I outlined Dr Fer's protocol and provided each with his comments regarding expected outcome and side effects.
The administrator of a popular prostate cancer internet site responded first. I swear, this fine gentleman works twenty four hours a day seven days a week. He is always responsive and always credible. If he doesn't have the answer, he will hook you up with someone who does. Because of his tendency to tell you the unvarnished truth, I have begun to think of him in terms of Iron Mike; his prompt response to my email appears in part as follows:
"Bicalutimide alone may be able to control the progression of your cancer for a considerable period...but it is not curative--and the minimal side effects comment seems a tad on the naive side.
On top of the risk for hot flashes. bicalutimide is associated with a significant risk of gynecomastia.*
There are a variety of ways to prevent or manage this. It is not clear which is best..."
The next morning I received a phone call from UFPTI; my case manager relayed the following message from Dr Gud E, Nuff:
"Casodex alone will cause permanent and painful gynecomastia. It is not a good idea"
In response to all the above I called Dr Fer's office and notified his nurse that I would not be needing a prescription for Casodex. She replied, "I will so advise Dr Fer." Also, rather than cancel my appointment with the second mainstream oncologist, as per an earlier inclination, I decided it may be advantagous to seek his advice and counsel.
*Abnormal development of large mammary glands in men resulting in breast development.
All of us who own a TV know about the drug industry's kitchen sink approach to side effects, but the stark contrast between Dr Fer's side effect prognostication and the internet listings, in my judgement, sounded the alarm with great clarity.
For additional perspective I contacted two of my trusted advisors. I outlined Dr Fer's protocol and provided each with his comments regarding expected outcome and side effects.
The administrator of a popular prostate cancer internet site responded first. I swear, this fine gentleman works twenty four hours a day seven days a week. He is always responsive and always credible. If he doesn't have the answer, he will hook you up with someone who does. Because of his tendency to tell you the unvarnished truth, I have begun to think of him in terms of Iron Mike; his prompt response to my email appears in part as follows:
"Bicalutimide alone may be able to control the progression of your cancer for a considerable period...but it is not curative--and the minimal side effects comment seems a tad on the naive side.
On top of the risk for hot flashes. bicalutimide is associated with a significant risk of gynecomastia.*
There are a variety of ways to prevent or manage this. It is not clear which is best..."
The next morning I received a phone call from UFPTI; my case manager relayed the following message from Dr Gud E, Nuff:
"Casodex alone will cause permanent and painful gynecomastia. It is not a good idea"
In response to all the above I called Dr Fer's office and notified his nurse that I would not be needing a prescription for Casodex. She replied, "I will so advise Dr Fer." Also, rather than cancel my appointment with the second mainstream oncologist, as per an earlier inclination, I decided it may be advantagous to seek his advice and counsel.
*Abnormal development of large mammary glands in men resulting in breast development.
Saturday, November 24, 2012
Mainstream Oncologist #1
After an hour delay Dr Cy Fer entered the examination room and cordially greeted my wife and me. His casual, besweatered attire suited his amiable, elderly persona; by way of internet I knew him to be 72.
At the outset we spent considerable time reviewing my medical history. Apparently Dr Fer did not have an opportunity to review the detailed background information I submitted as a prerequite to our appointment. Evidently the proposed agenda I prepared also escaped his attention. Even so the agenda proved helpful inasmuch as we referred to it from time to time to facilitate our discussion.
Following a review of my medical history Dr Fer focused on the unfortunate unavailability of any truly good treatment options for those of us with recurrent cancer. "If we fellows only possessed the temperament and organizational inclination of womenfolk, our prospects would be substantionately better." "Look at the progress attained in the treatment of breast cancer," Dr Fer implored. He looked to my wife for affirmation on this point. As a 12 year survivor of breast cancer, she readily and wholeheartedly agreed.
As one part of our dialog Dr Fer opined my recurrent cancer may not be limited to my prostate gland as determined by the choline scan and confirmed by the chemically enhanced, endorectal MRI. He wanted us to realize that " all such scans are subject to error both false negatives and false positives." He reminded us " this is particularly true of newly developed scans no matter how highly touted or aggressively marketed." I was generally aware of the imperfections of all such scans, but it was conclusively persuasive to hear this from a seasoned practitioner.
I knew Dr Fer currently provided followup care for a friend of mine whose treatment plan had been developed by a group in California described by one of my advisors as non-mainstream, called Cancer Patient Advocacy Clinic. This group uses hormone therapy to treat primary prostate cancer followed by a repeat of hormone therapy combined with antiangiogenic cocktail, followed by chemotherapy and so on until the cancer is cured or controlled. My friend underwent this pattern over a two and a half year period and has remained cancer free for eleven years as indicated by a low and stable PSA. I called my friend's experience to Dr Fer's attention and asked him if he thought the CPAC approach may be appropriate for my situation. "Unfortunately", he responded," CPAC does not publish their results, consequently I have no basis for recommending their methods. For your information I have three of CAPC's former patients including your friend whose case I regard as exceptional and two others whose outcomes I regard as unsuccessful."
Just as I began to think all of us had gotten off track irretrievably Dr Fer raised the prospect of a treatment plan. "Casodex", he announced unobtrusively, "a colleague of mine has met with a fair amount of success using this approach. A 50 mg tablet per day," he explained ," may control the progression of your disease for up to ten years with minimal side effects." "About the worst you could expect," he continued "would be hot flashes." "How would you rate my chances for such a favorable outcome?" I asked." "Better than even," he replied. "This regimen," he explained further, "also avoids the loss of muscle mass caused by traditional hormone therapy." "My patients on HT." he advised, "measure the reduction in their strength by the shortened distances of their drives off the tee." Although a non-golfer I do play tennis, consequently Dr Fer's message resonated with me. None of us would-be athletes want our game compromised.
While it is true I did not much care for Dr Fer's overall approach to our interview, I must admit the Casodex solution sounded extremely promising. The 50/50 chance of a favorable longterm outcome with no serious side effects possessed advantages far superior to anything my research had produced to date...or so it seemed. I thanked Dr Fer for his time, told him I would like to think about his proposal and get back to him. He signaled his approval and we parted company.
At the outset we spent considerable time reviewing my medical history. Apparently Dr Fer did not have an opportunity to review the detailed background information I submitted as a prerequite to our appointment. Evidently the proposed agenda I prepared also escaped his attention. Even so the agenda proved helpful inasmuch as we referred to it from time to time to facilitate our discussion.
Following a review of my medical history Dr Fer focused on the unfortunate unavailability of any truly good treatment options for those of us with recurrent cancer. "If we fellows only possessed the temperament and organizational inclination of womenfolk, our prospects would be substantionately better." "Look at the progress attained in the treatment of breast cancer," Dr Fer implored. He looked to my wife for affirmation on this point. As a 12 year survivor of breast cancer, she readily and wholeheartedly agreed.
As one part of our dialog Dr Fer opined my recurrent cancer may not be limited to my prostate gland as determined by the choline scan and confirmed by the chemically enhanced, endorectal MRI. He wanted us to realize that " all such scans are subject to error both false negatives and false positives." He reminded us " this is particularly true of newly developed scans no matter how highly touted or aggressively marketed." I was generally aware of the imperfections of all such scans, but it was conclusively persuasive to hear this from a seasoned practitioner.
I knew Dr Fer currently provided followup care for a friend of mine whose treatment plan had been developed by a group in California described by one of my advisors as non-mainstream, called Cancer Patient Advocacy Clinic. This group uses hormone therapy to treat primary prostate cancer followed by a repeat of hormone therapy combined with antiangiogenic cocktail, followed by chemotherapy and so on until the cancer is cured or controlled. My friend underwent this pattern over a two and a half year period and has remained cancer free for eleven years as indicated by a low and stable PSA. I called my friend's experience to Dr Fer's attention and asked him if he thought the CPAC approach may be appropriate for my situation. "Unfortunately", he responded," CPAC does not publish their results, consequently I have no basis for recommending their methods. For your information I have three of CAPC's former patients including your friend whose case I regard as exceptional and two others whose outcomes I regard as unsuccessful."
Just as I began to think all of us had gotten off track irretrievably Dr Fer raised the prospect of a treatment plan. "Casodex", he announced unobtrusively, "a colleague of mine has met with a fair amount of success using this approach. A 50 mg tablet per day," he explained ," may control the progression of your disease for up to ten years with minimal side effects." "About the worst you could expect," he continued "would be hot flashes." "How would you rate my chances for such a favorable outcome?" I asked." "Better than even," he replied. "This regimen," he explained further, "also avoids the loss of muscle mass caused by traditional hormone therapy." "My patients on HT." he advised, "measure the reduction in their strength by the shortened distances of their drives off the tee." Although a non-golfer I do play tennis, consequently Dr Fer's message resonated with me. None of us would-be athletes want our game compromised.
While it is true I did not much care for Dr Fer's overall approach to our interview, I must admit the Casodex solution sounded extremely promising. The 50/50 chance of a favorable longterm outcome with no serious side effects possessed advantages far superior to anything my research had produced to date...or so it seemed. I thanked Dr Fer for his time, told him I would like to think about his proposal and get back to him. He signaled his approval and we parted company.
Monday, October 29, 2012
The Plot Thickens
I have never seen it stated per se, but in the world of
prostate cancer, there appears to be an unwritten rule that goes something like
so: A doubling time of one year is about par for the course. The longer the doubling time the better. A doubling time of less twelve months is worrisome indeed.
With this thought in mind I reviewed my PSA history which prompted the following e-mail to my case manager:
Last evening I put a pencil to my PSA history on file at UFPTI. Three pertinent values appear below:
3/11/2011 .8
4/3/2012 2.0
10/8/2012 3.96
From 3/11/2011to 4/3/2012, a period of one year, my PSA more than doubled.
Over the past six months my PSA has (virtually) doubled.
In the past year and a half my PSA has increased five fold.
While my current value of 3.96 seems relatively insignificant, the sharp increases and trendline contribute to my concern.
Any feedback you and Dr Gud E. Nuff care to provide would be appreciated.
I have made progress in my effort to bring additional expertise to my "situation". I have two appointments lined up with mainstream oncologists who as a part of their practice treat prostate cancer, one of whom I have seen on two other occasions, i. e., Dr Trucair.
Not knowing otherwise it would appear that my quality of life is at risk.We will see what the experts have to say. My next journal entry will focus on the feedback of UFPTI and the two other mainstream practitioners.
With this thought in mind I reviewed my PSA history which prompted the following e-mail to my case manager:
Last evening I put a pencil to my PSA history on file at UFPTI. Three pertinent values appear below:
3/11/2011 .8
4/3/2012 2.0
10/8/2012 3.96
From 3/11/2011to 4/3/2012, a period of one year, my PSA more than doubled.
Over the past six months my PSA has (virtually) doubled.
In the past year and a half my PSA has increased five fold.
While my current value of 3.96 seems relatively insignificant, the sharp increases and trendline contribute to my concern.
Any feedback you and Dr Gud E. Nuff care to provide would be appreciated.
I have made progress in my effort to bring additional expertise to my "situation". I have two appointments lined up with mainstream oncologists who as a part of their practice treat prostate cancer, one of whom I have seen on two other occasions, i. e., Dr Trucair.
Not knowing otherwise it would appear that my quality of life is at risk.We will see what the experts have to say. My next journal entry will focus on the feedback of UFPTI and the two other mainstream practitioners.
Sunday, October 28, 2012
Point Counterpoint
Since releasing my last journal entry, which in
retrospect appears a tad panicky, I discovered in my ever-growing
stockpile of prostate cancer materials an article written by Dr Charles
(Snuffy) Myers that reduces my concern. In a discussion relating to a rising
PSA following prostetectomy Dr Myers points out some patients will not
experience serious health problems until PSA values reach between 1000 and
2000. He goes on to explain that a person with a doubling time of one year and
a PSA of 3.96 like myself will not reach the danger zone for about eight years.
To think it may be possible to continue my current quality of life without
seriously jeopordizing my general health for this period of time is very. very
comforting. My gosh, why has none of the experienced clinicians that I have
interacted with since my PSA began to rise called this medical data to my
attention? Phenomenal! Unbelievable!
With that said let me provide a little counterpoint as did Dr Myers. Just as I recently hedged my bet (refer to my previous journal entry), Dr Myers engages in a little scientific hedging of his own. Immediately following his statement about the absence of serious health problems until one's PSA exceeds the 1000 mark, he goes on to say "Despite this I begin treating my patients as soon as the PSA begins to raise". He supports this practise by citing a number of studies that suggest by doing so longterm outcomes are improved.
My case manager responded to my UFPTI inquiry as follows (paraphrased):
"Your PSA remains low: "Our advice for you is to stay the course, i. e., continue to watch and wait".
So where does this new infomation leave me? Emotionally I feel less panic stricken. Intellectually I still feel the need to locate a knowledgable prostate cancer specialist to serve as a sounding board and technical advisor. I intend to pursue this goal , perhaps at a more leisurely, less frantic pace.
An observation: The roller coaster ride is no less tumultuous than when I commenced this excursion several years ago. As they tend to say these days: I can't make this stuff up
With that said let me provide a little counterpoint as did Dr Myers. Just as I recently hedged my bet (refer to my previous journal entry), Dr Myers engages in a little scientific hedging of his own. Immediately following his statement about the absence of serious health problems until one's PSA exceeds the 1000 mark, he goes on to say "Despite this I begin treating my patients as soon as the PSA begins to raise". He supports this practise by citing a number of studies that suggest by doing so longterm outcomes are improved.
My case manager responded to my UFPTI inquiry as follows (paraphrased):
"Your PSA remains low: "Our advice for you is to stay the course, i. e., continue to watch and wait".
So where does this new infomation leave me? Emotionally I feel less panic stricken. Intellectually I still feel the need to locate a knowledgable prostate cancer specialist to serve as a sounding board and technical advisor. I intend to pursue this goal , perhaps at a more leisurely, less frantic pace.
An observation: The roller coaster ride is no less tumultuous than when I commenced this excursion several years ago. As they tend to say these days: I can't make this stuff up
Sunday, October 21, 2012
Hedging My Bet
My PSA came in at an alarming 3.96 which puts it on
track to double in one year. As the reader may recall this is the criterion
recommended by Dr Gud E. Nuff as the point at which we may wish to reconsider
his prescription to watch and wait. I readily agreed to this course of action,
because at the time, it seemed to make oh so much sense. The current reading
combined with the sharp increase in my PSA trendline over the past year and a
half makes the watch and wait option far less attractive.
Rather than sit back, do nothing, or continue to watch and wait, I intend to seek out a bonafide prostate cancer specialist to (1) review and critique my treatment options (2) serve as my technical advisor, and (3) assist me in the decision-making process from this point forward. The vetting process may take awhile; I have three prospects in mind. I could interview all three and choose among them. Or if indicated I could broaden my search. If on the other hand the first candidate appears to be a perfect fit or a reasonable approximation thereof I may look no further.
In addition, based on my current result and the clearcut steep incline in my PSAs over the past year and a half, I intend to contact UFPTI and raise the following question: From a quality of life standpoint is it in my best interest to continue to watch and wait?
Rather than sit back, do nothing, or continue to watch and wait, I intend to seek out a bonafide prostate cancer specialist to (1) review and critique my treatment options (2) serve as my technical advisor, and (3) assist me in the decision-making process from this point forward. The vetting process may take awhile; I have three prospects in mind. I could interview all three and choose among them. Or if indicated I could broaden my search. If on the other hand the first candidate appears to be a perfect fit or a reasonable approximation thereof I may look no further.
In addition, based on my current result and the clearcut steep incline in my PSAs over the past year and a half, I intend to contact UFPTI and raise the following question: From a quality of life standpoint is it in my best interest to continue to watch and wait?
Subscribe to:
Posts (Atom)