Tuesday, December 11, 2012

Setting the Record Straight

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.

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

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.

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.

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.

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

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?

Saturday, October 20, 2012

Hormone Therapy Part II

Before Dr Gud E. Nuff replied to my question regarding whether I would  jeopardize my quality of life by delaying the initiation of hormone therapy, I sent him the following "unscientific proposal":
 Let's engage in a clinical trial of one as outlined below:
 1. Begin with a shot or two of lupron to starve, weaken and shrink the 1.1 cm cancerous nodule identified by Mayo Clinic
 2.Kill what remains with  proton radiation at whatever volume it takes as determined  by UFPTI
 3.Reduce the liklihood of a recurrence by adopting a life long regimen of finasteride.
Dr Gud E. Nuff responded to both the inquiry and the proposal by way of a phone call from his nurse assistant who serves in a related capacity as my case manager. In summary UFPTI believes it would be advantageous for me to watch, wait, monitor and reevaluate when and if my PSA doubles within a year..
My case manager and I also discussed my eating style. Through this discussion I learned that she is a vegetarian and ( based on her enthusiasm) a would-be dietician. She suggested my dietary habits  needed a major overhaul.
In brief, I agreed to the advice and counsel of  Dr Gud E. Nuff and his nurse assistant.
I am convinced that it is a matter of time before I will need to adopt some form of hormone therapy. I would like to believe that by delaying this move, I will not only extend the quality of my life, but will add to my longevity as well. I suspect there is some risk involved in walking this tightrope, but it is a calculated risk I willingly accept.
I have begun to modify my diet. The changes include less red meat, less sweets, more fruits, more vegetables and more fiber. To my pleasant surprise I have already lowered my blood pressure which has been borderline high for the past several years. If in the long run I improve my general health and slow the progression of the cancer... well... amen and hallelujah!
For the record: Before I submit to hormone therapy I intend to press the issue of my unscientific proposal a bit further in an attempt to garner a substantative response.

Hormone Therapy Part I

My research effort into hormone therapy uncovered a bit of a medical controversy, namely, at what point should HT be initiated? Does one nip his cancer in the bud, so to speak, or does one wait until the disease evolves. This issue prompted me to pose the following question to a few knowledgeable others whose judgement I trust:
Would I be extending or jeopardizing my quality of life by delaying treatment until my disease progresses, i.e., as indicated by a higher PSA ( if so to what level?) or there is evidence of metastisis?
In raising this question I reminded my advisors of the following factors:
1, My PSA is fairly low
2. The cancer is limited to my prostate and limited in size (1.1 cm), but
3, Evidently I have a virulent form of cancer since it withstood 8 weeks of proton radiation
4. My Gleason score indicates a moderately aggressive form of cancer 7(4+3) or according to a recent review of my slides by Mayo Clinic 8(4+4)
5. I have a rapidly rising PSA ( from a nadir of .8 two years post treatment on 3/11/11 to 3.1 on 7/2/12 .
The first advisor to respond said the answer depended on my propensity for risk taking. He also suggested that I consider HIFU. Upon reflection I had to admit (to myself) that at this stage in my life I was  neirher adventuresome nor much interested in risking what remains of my quality of life. I did, however, undertake a little research project.
HIFU stands for high intensity focused ultrasound. I found little information on how this procedure is carried out. My impression is that the procedure is associated with infections and bladder obstructing treatment "residue". As a first line therapy I reviewed anecdotal testimony ranging from rave reviews to cautionary admonitions.
I did locate a study on the use of HIFU as salvage therapy, more particularly, for men who experiencd biochemical failure following external beam radiation (IMRT). A summary of the outcome of the 84 patients appears below:
-- 43%, less than half ,  had a 2 year "progression free" survival
--62% were "pad free"
--50% experienced an erosion of their potency
--20% required intervention for bladder outlet obstruction
-- 2 patients experienced a fistula 1 each in their urinary tract and rectal wall
These results appear to be less favorable than either treatment option offered by Mayo Clinic, i. e.,( a) lupron followed by seed implantation or (b) cryotherapy. As the reader may recall I declined Mayo's offer and, quite frankly at this juncture, I am not predisposed to accept what HIFU has to offer.


Options Considered and Rejected: Reality Sinks In

I have returned to Michigan from Rochester, Minnesota. The gravity of my situation has begun to take shape. Dr Qu Ting Edge referred me to a radiation oncologist for the development of a treatment plan. This specialist recommended seed implantation preceded by a three month regimen of ADP. While in his office this clinician provided my wife and me with a published research article he coauthered The reported outcomes are as follows;
-- 75% achieved biochemical control for the 4 year followup period
--47% experienced  serious urinary side effects, 12% of these patients required minor surgical intervention, 6% required major surgical intervention                                          
--29% experienced  serious GI complications, one of these patients required major surgical intervention
These results struck me as unacceptable, and I so advised the clinician.
This same article cited cryotherapy as being somewhat less effective. Earlier during my visit Dr Q T offered to arrange a meeting with their cryotherapist. After reviewing this article I contacted Dr Q T's office and declined the opportunity to meet with this specialist.
Throughout my research effort I have worked closely with UFPTI. In the back of my mind I thought (a) if indeed I had cancer and (b) it were moreorless localized (c) I may wish to address the problem with proton radiation. I asked Mayo's radiation oncologist to comment on this possibility; he responded as follows: " I would not be inclined to recommend proton or any other external beam radiotherapy whatever a second time."

Throughout my prostate cancer ordeal surgery has never appealed to me because of the all too common side effects of incontinence and impotence. It is even less attractive now that I am 76 with a thoroughly radiated prostate gland.
My focus remains on hormone therapy. I am arranging for a consultation with two seasoned prostate oncologists one of whom is a locally based traditional mainstream practitioner and the other less so in both respects. The latter is described as non-traditional and non-mainstream, and  he is located in California.  It is my intent to have a plan developed by the non-mainstream clinician  to be reviewed, critiqued  tweaked if indicated and implemented  by the traditionalist.
So there you have it, at least for the time being.



Good News or What??? The Verdict Is In

Thanks to the miracle of modern day medicine and Mayo Clinic's choline scan guru, Dr Qu Ting Edge, I now know the source of my rapidly rising PSA. I have cancer in the upper left quadrant of my prostate. Thankfully also, there is no evidence of metastisis elsewhere; lymph nodes, bones and other body organs absolutely cancer free.
Dr Q. T. surmises the cancer in my prostate is not new. In his judgement the proton beam simply missed its target. He punctuated his opinion with the revelation that this outcome is not at all uncommon.*  Imagine that ....the proton solution is less than perfect.
The problem now becomes what to do, what to do? I am back to square one. This time, however, I have three and a half additional years on this aging, radiated frame to contend with.

*A belated footnote appears to be in order. Subsequent to this entry a representative of UFPTI reacted increduluously to these comments. She explained, "I know how thoroughly we radiate the prostate at this institution. It is highly unlikely that we missed any part of your prostate. In fact we treat a small margin over and beyond the outer edge of the gland." Subsequently I met with another Mayo radiation oncologist who expressed high regard for the accomplishments of Dr Q.T., but who tended to agree with the views of the UFPTI representative.

Research Nugget

A Pca buddy of mine responded to one of my internet "What Next" inquiries. He called my attention to a screening procedure known as a choline scan. The purpose of this scan is to detect prostate cancer at very low levels throughtout the body wherever it may exist. This procedure is currently available only at Mayo Clinic in Rochester, Minnesota. I contacted UFPTI to get their opinion of this technique. Conceivably it offers a far better alternative to waiting until the cancer progresses to the point that it is detectable by the more common but less sensitive screening methods..
Dr Gud E. Nuff  agreed the choline scan may provide the information needed to develop an effective treatment plan. I am currently scheduled for such a scan on July 12th; my appointments are as follows:
1, Preliminary lab workup.
3. Choline Scan
4.Followup consultation with a Mayo physician to discuss results and treatment options.
In the meantime I will continue to research with a focus on hormone therapy.The choline scan, however, has the potential to change everything.
The tumultuous journey continues.

Watch, Wait, Monitor and Research

My managing physician at UFPTI agrees I have reason for concern, but does not consider my situation as urgent. Eventually he wants me to come to UFPTI for a biopsy, MRI and Cat-scan, but not any time  soon. In his opinion the velosity of my PSA is fairly low, and what ever is causing its upward trend may be undetectable at this time.

To My Family, Friends and Cyberspace Buddies

This is one of the more difficult written tasks I have undertaken. I am using this forum to let you know that in all liklihood my cancer treatment may not have been wholly successful. Over the past year or so my PSA has been gradually rising.Today I received a PSA result of 2.59 which represents nearly a doubling of value over the past eight months. If you look back an entry or two you will readily understand this is a very bad sign indeed.
What the future holds none of us mere mortals can begin to appreciate. What I do know is that my family and friends are what matter most. I will be forever grateful for your continued love, support, prayers and companionship.
I intend to work closely with UFPTI in determining my next course of action.

Lions and Tigers and Bears, Oh My

My PSA registered a disappointing and worrisome 2.0. At this juncture my casemanager and Dr Gud E. Nuff have decided to explore the possibility of prostatitis. Proton radiation evidently compromises the immune system in the area treated including the prostate gland, bladder and colon. Consequently a small percentage of us, less than 5 %, experience an infection in one or more of these areas.
Dr Gud E. Nuff prescribed a two week course of the antibiotic "Cipro" to determine whether an infected prostate may be causing the gradual rise in my PSA. After two weeks of medication I will have my PSA retested. If my PSA goes down, it means I had an infection. If it has no effect and/or my PSA continues to rise, it could indicate my problem is far more serious.
On the day I began taking Cipro (prior to my first dosage) another symptom arose, namely, two or three drops of blood appeared in the commode after urinating. My casemanager advised me this could be (1) related to the prostatitis if indeed I have such an infection or (2) neovascularization, i.e., new blood vessels forming in the treated area which tend to rupture easily and slough off.
Based on my PSA pattern and symptoms my casemanager is unable to detemine whether my problem is relatively benign or totally dreadful. Asked directly which outcome is more likely she replied, "Your guess is as good as mine". *
Uncertainty, vagueness and ambiguity associated with a vital quality of life issue. As Dana Carvey would say in his former Saturday Night Live Church Lady routine "Well, isn't that special." Protondon's tumultuous journey continues. Stay tuned.

*In all honesty and more correctly this is a decidedly biased interpretation of her response. In the above paraphrased quote, I attempted to capture the essence of her message. Her actual response was more professional, more technical, more detailed and substantially more diplomatic.

Don't Worry Be Happy

In conjunction with a post treatment followup, I had a telephone conversation with my casemanager. Toward the end of our discussion I expressed my concern in regard to my erratic PSAs and upward trend. Her response appears below:
(1) "Everyone's post treatment PSA pattern is different."
(2) "I see nothing unusual or out-of-line with your PSA history."
(3)" It may take a full three years for your PSA pattern to settle down and/or become less erratic."
(4)"There appears to be a pattern to your PSAs that look to be laboratory related. The results conducted by the laboratory in Texas appear to be lower than those reported by the Michigan laboratory. These differences may be attributable to the differences in equipment and procedures used." (Personal note: the differences in laboratory results may also account for much of the apparent erraticism).
All in all I regard my casemanager's comments and observations as very, very comforting.Her astuteness represents another example of the competent, conscientious care provided by the staff of UFPTI.
It may be time for an attitude adjustment on my part, i.e., Don't Worry Be Happy. Conversely, who knows what conundrum may be lurking around the corner. My next PSA will be conducted in January by a laboratory in Texas. Stay tuned.

Roller Coaster Express

My latest PSA came in at an alarming 1.6 which represents a doubling of value in the past nine months. Many of the readers of this entry will realize that a doubling of one's post-treatment PSA within a period of one year is generally associated with biological failure or recurrence and an indication of aggressive progression. My initial reaction has been one of extreme anxiety. Once again, I thought, my quality of life is under attack. A limited research effort served only to reinforce this deep-seated fear.
Then comes a spirited data exchange between me and my case manager at UFPTI. The most recent UFPTI standard, she advised me, focuses on (1) each patient's PSA baseline, i.e., the first result immediately following the cessation of treatment* and (2) a patient's PSA trendline over an extended period. She regards the doubling of my PSA over the past nine months as a short-term phenomenon and therefore relatively inconsequential. Furthermore, she reiterated, " I see nothing unusal or out of line with your PSA history".
Based on our conversation my state of panic has subsided substantially, although I admit to a wee bit of skepticism. In action and in deed I will consider myself as having dodged another bullet, that is, until and unless I receive clear evidence to the contrary. My next regularly scheduled PSA is due in April.
*My baseline score of 2.41 provides a degree of reassurance.

Every Roller Coaster Ride Has its Ups and Downs: Relishing a Crest

An internet Pca buddy of mine recently metamorphed into a valued friend. Aware of my PSA concerns he invited me to participate, indirectly, in his one year post treatment consultation at UFPTI. He offered me an opportunity to submit questions for his physician's consideration. He assured me his physician, Dr. Joy Tidings, is extraordinarily bright, an expert and the most reliable source at the institution. In addition to these admirable qualities her unusual name turned out to be amazingly prophetic.
The questions I submitted (Q's), her responses (R's) and my optimistic interpretations (MOI's) appear below:
Q.1. Are all prostate cells killed by proton therapy or do healthy cells survive thus continuing to produce the protein measured by the PSA test?
A.1. Not all healthy cells are destroyed during treatment, but some are. Whether a cell survives is dependent on what cycle the cell was in during the time of treatment. Some healthy cells are damaged but regain their health and begin to produce the protein antigen. This explains why there can be a rise in the PSA score after treatment. It is no indication of biochemical failure or recurrence.
MOI. 1. Based on this perspective one could argue a moderate rise in one's PSA is a positive indication.
Q.2. Does the institute base its concern on the rate of increase from test to test, or from an increase in the baseline score over a selected amount of time?
A. 2. There is concern only when the PSA score gains two or more points on two consecutive tests. What the institute is looking for is a trend or pattern. The PSA scores may vary, up or down, over the course of four years. Any increase of the PSA that is less than two points over two consecutive tests is No Cause For Concern (emphasis mine).
MOI. 2. In view of this crystal clear standard, I have little to worry about.
Q, 3. What constitutes an extended upward movement of the PSA score that would be an indication of biological failure?
A, 3. The institute is looking for trends over a four year period. The PSA score is going to flucuate. To date, there has been only one biochemical failure of a patient at UFPTI. For reasons unknown the radiation did not kill the cancerous cells. The patient was subsequently treated by surgical removal of the gland.
MOI. 3. Based on this perspective (a) my worry and concern may have been a tad premature and (b) at this juncture I have difficulty visualizing myself as UFPTI's second biochemical failure.
I may not be out of the woods completely, but my new found compass improves my chances for a safe exit substantially.
My next routine PSA test, scheduled for April, looms on the horizon. Stay tuned.

Worrisome Trend Continues

The following letter serves as my current entry:
Dear Dr Gud E. Nuff:
Let me begin by expressing my appreciation for the excellent care you have provided throughout my treatment at UFPTI. I especially appreciate the patience you have shown answering all the questions I raised over the past two and a half years. My latest concern is an upward trend in my PSAs the last three of which appear below:
May .8
August 1.27
October 1.39
Shouldn't my PSAs have leveled out at this point in time? The upward trend is particularly worrisome. Is this concern justified? I would very much appreciate (1) your review of my medical records on file at UFPTI, and (2) your professional assessment of this unexpected rise in my PSA values.
Also as a matter of revelant interest: What does the pattern of a successful outcome look like over , let's say, a five year period? Same question for an unsuccessful outcome? If the answer to these questions depend on the age of the patient, his general health and his disease characteristics use my case as an example.
FYI The contents of this letter will appear as an update to my ongoing internet journal. Your reply will appear as my next entry.
Thanks again for the conscientious care you have provided throughout the course of my treatment.
Don Oberlin

Saturday, October 13, 2012

Another Bump in the Road?

.My most recent PSA registered a disappointing 1.27 an increase of .47. I wish it were lower, but it is too soon to panic. I have experienced minor blips before, and hopefully, this too will be nothing more than a minuscule bump in the road. I remain mindful of the following two UFPTI post-treatment standards:
(1) Any number under 1.5 is good.
(2) It is time for concern only when a patient experiences consecutive rises of at least two points.
October's result will undoubtedly be better. Right? Right.

Wednesday, October 10, 2012

Colonoscopy Surprise Research Completed

Dr. A.N. Swer's response took the edge off my worry and concern. His final words of advice "Don't worry" support the gist of my additional research, a summary of which appears below:
(1)Bob Marckini
"The condition you describe is very common. It is a phenomenon called radiation induced neovascularization. New blood vessels form in the small area of the anterior wall of the rectum... in general it's nothing to be concerened about. The good news is that they intentionally treated a margin around your prostrate. This serves to kill the cancer that is in the margins. This includes any prostate cancer that might have been in the margins. Having an invisible scar is a small price to pay."
The physician who planned and supervised my care at UFPTI responded to a letter outlining my concerns as depicted below:
(A) We refer to the condition you describe as radiation scarring---not damage.
(B) This condition is unlikely to progress.
(C)Be certain not to let anyone biopsy the affected area.
This message was delivered over the phone by his nurse.
(3)An Interactive Proton Radiation Website
This site provided a wide range of reponses. Perhaps the following two were the most relevant and the most diverse:
(A) "Based upon the fact that you were competently counseled based upon prior entries to your blog, and based upon your review and knowledge of the precise relevant passage of Marckini's book, I cannot imagine why you feel justified in saying evidence of radiation damage is a surprise."
(B) "Thanks for your post and your compelling blog which gives a guy like me a glimpse of one patient's real world post-protion treatment ups and downs. "
Case closed. The bottom line is that had I been prepared for the striking difference in the pretreatment/posttreatment colonscopy photographs, there would have been far less handwringing, agony, worry and concern.Hopefully the readers of this journal will be spared these emotions.

Friday, August 24, 2012

Post Treatment Colonoscopy: An Update

As reported in my previous entry, proton radiation permanently damaged a small segment of my colon. This diagnosis triggered an immediate research effort on my part. I am particularly interested in its long term implications. My research is incomplete and ongoing. In view of the potential interest to others, however, I feel compelled to file this interim report based exclusively on the opinions of Dr. A. N. Swer.
Dr. Swer is a practising physician with a Phd. in microbiology from Harvard University. His specialty is nuclear medicene. His interest in prostate cancer and proton therapy has been augmented by personal experience with both. Based on a photograph posted on the internet Dr. Swer's colon looks a lot like mine. In response to several of my concerns, Dr. Swer opined, in part, as follows:
"I would consider angiodysplasia to be the word for the tissue changes that are associated with radiation proctitis. Since the procedure that cured my bleeding, I have not worried about my angiodysplasia (which is likely worse than yours). My bleeding didn't start until many months after the treatment though I imagine that a great many men who have had photon or proton radiation for Pca have angiodysplasia of one degree or another and one pattern or another, with or without problems from it. I haven't seen a publication documenting this, however, I think it would be quite interesting ... I can't guarantee that you will never bleed, but also my guess is that area will never heal..."
"Radiation for Pca likely creates a small increase in the risk of cancer in tissues that it doesn't kill, including but not limited to the adjacent bowel. The overall increase is probably lower with proton than with photon therapy. That consideration goes in the plus column for choosing protons...
In short, I think your gastroenterologist is right on target, including scheduling you for follow-up colonoscopy; and my final word of advice, for what it's worth is: Don't worry."
Dr. Swer's expert opinion may not qualify as the clean"Bill of Health" I may have hoped for , but
it is not the proverbial "Kiss of Death" it could have been. More specifically my worst fears have been substantially amelioriated.In retrospect at this juncture the worst part of my colonoscopy mini-adventure is the complete absence of any expectation of permanent colon damage. None of my research before, during or after treatment prepared me for this outcome.

Saturday, August 11, 2012

Post Treatment Colonoscopy A Good Outcome With A Few "Inconvenient" Surprises

My colonoscopy uncovered a precancerous polyp which my physician removed as a matter of routine. This outcome was not unexpected, since I had similar results with my two previous colonoscopies five years and ten years hence. This was welcome news nonetheless because of the uncertainty introduced by the intervening proton radiation.

Thanks to my wife and her conscientous record keeping, I was able to compare the photographs of my current colonoscopy with those taken in 2006. What I saw caused concern. Comparatively the current photographs showed substantially larger and considerably redder blood vessels. In two of the five photographs, it appeared as if bleeding had occured. Accordingly I contacted by physician; the phone discussion developed as follows:

Comment: Please explain the differences between the current photographs and those taken in 2006.

Response: What you see is the result of radiation. Such damage to the colon is concommitant to all forms of radiation.

Question: Is there a difference between the effects of proton radiation and photon radiation?

Response: In my 30 years of practise you are my first patient to have undergone proton radiation. I would say that comparatively speaking you have a considerably milder version of what I typically see.

Comment: Two of the photographs were particularly red; please elaborate.

Response: Those particular areas appeared atypical and required a degree of probing and compression; consequential bleeding occured. No doubt these areas have completely healed by now and should not be a concern to either of us at this point.

Question: How much of my colon has been damaged?

Response: A very small segment in the area of the prostate.

Question: What kind of problems can I expect in the future?

Response: Inasmuch as you have experienced no problems in the past, e.g., spontaneous bleeding, it is unlikely you will experience any problems in the future.
Question: Is the damage to my colon temporary or permanent?

Response: I would be very surprised if it looked much different when we reexamine five years from now. I do not expect further deterioration nor do I expect much improvement.

In conclusion I would say (1) There has been permanent damage to a small portion of my colon that I did not expect based on my (limited) research to date and (2) It may be something or it may be nothing. Perhaps this entry will generate enlightened comment.



Wednesday, July 25, 2012

Tumultuous Journey Smooths Out

.My  post treatment two year anniversary PSA came in at .8.  UFPTI considers any post treatment PSA under 1.5 as a positive sign. In retrospect over the past year and a half all six of my PSAs have been under this guideline. Hooray and hallelujah for a reassuring post treatment trend.

Sunday, July 15, 2012

Promising Turn of Events

Rather than continuing its upward trend, my PSA registered a reassuring .8 this trimester. A second positive step occurred in my recovery,i.e.,the total absence of colonic bleeding. The reader may recall 30% of us who undergo proton radiation experience such bleeding. Needless to say I am extremely pleased with these developments.
Other than routine PSA monitoring the next most notable milestone in my post treatment history will be a colonscopy which is overddue, but should take place next spring. In the meantime HAPPY HOLIDAYS!

Thursday, June 14, 2012

Cause for Concern

My last five PSA results were as follows: Oct.2009, .55; Dec. 2009, .9; March 2010, .8; June 2010, .83; Sept. 2010, 1,03. There appears to be a modest trend in the WRONG DIRECTION! Accordingly I contacted UFPTI. "Not-to-worry," as goes my interpretation of their response,
"we do not believe cause for concern exists until a patient experiences consecutive rises in their PSA of at least 2 points. This would mean a rise of 4 points over a 6 month period. My modest, inconsistent elevation over the past 12 months seems inconsequential when compared to this standard. Even so, I would prefer that my PSAs trended downward, not upward.


Thursday, May 17, 2012

Double Lucky

My PSA came in at at .83. Trimester by trimester my results tend to parallel Marckini's whose PSAs continued to drop to a nadir in the .4 range. If my PSAs continue to match his, I will consider myself well on the way to recovery thanks to Marckini. And thanks to George Lewis whose national news report called my attention to proton therapy and Marckini's phenomenal book "You Can Beat Prostate Cancer and You Don't Need Surgery to Do it".

We returned to Michigan in mid-April. There has been a major improvement in my potency since our return [and my prior journal entry]. The dramatic downturn was most likely situationally based, i.e. ,due to the increased physical activity I engage in while hiding out in south Texas to avoid Michigan winters. While some degree of permanent degradation may have occurred, it is [1] much less severe than initially reported, [2] managable, [3] less disconcerting and [4] most likely a result of the aging process. If radiation is a factor Dr Good E. Nuff would almost certainly catagorize it as negligible.




Friday, May 4, 2012

Dr Trewkare Revisited

Rather than return to Jacksonville for my belated one year follow-up exam, I arranged to be seen here in Michigan by Dr. Trucair. Although a thoroughly experienced oncologist who specializes in prostate cancer, I was the first patient of Dr. Trucair to have undergone proton radiation. He was noticeably impressed with my lack of side effects and even more so with the results of the DRE he conducted. "Your prostate feels more normal than any post-radiation patient I have examined to date; this is truly significant", he explained ," I must share this information with my colleagues." "Even so," he continued, "some effects of radiation take a long time to materialize. "Accordingly,"he indicated, "I would like to see you in six months."

Toward the end of our appointment Dr. Trucair made a few additional comments worthy of note. He mentioned the development of a new proton center in the Flint area here in Michigan. The first patient is scheduled to be treated at this facility in approximately one year. "Proton radiation is a very expensive proposition," Dr. Trucair commented,"but, in the absence of side effects to be medically managed, the costs of treating with protons will not be much different when compared to other treatment modalities over the long run." He then conjectured, "In the future I can see where proton therapy may become the preferred method for  prostate cancer." I thought this was very positive way to conclude our appointment

The next hurdle for me to  negotiate will  PSA test.my upcoming 18 month post treatment This will occur in three months or so.