Saturday, December 27, 2008

Treatment Prelude

Last week I underwent a series of tests and procedures conducted by a group of highly trained professionals using a variety of sophisticated equipment to: (1) determine whether the cancer has spread beyond my prostate (2) properly align my body to administer the exact amount of proton energy to its target area and (3) provide a data base for developing a comprehensive treatment plan. It was indeed an impressive undertaking. I will not know the results of the diagnostic tests for a week or two.

Another major development occured this week. I was given a start date. My treatment begins January 14, 2009.

Tuesday, December 23, 2008

Proton Treatment Delimma

While awaiting treatment for prostate cancer, time is your enemy; a quality of life, if not, life threatening enemy to be sure. The following factors come into play:

---Relationship of PSA to treatment outcome. A medical study conducted in April of 2002 by James Metz M.D. contains a chart which shows a clear relationship between PSA level and prostate cancer cure. Higher PSA scores are directly related to lower cure rates. As readers of this journal know my PSA levels are rising at a fairly rapid pace.

---Cancer cell development. As I understand it cancer cells reproduce along the following lines: A single cell materializes, this cell devides into two cancer cells which in turn devides into four, four into eight, eight into sixteen and so on. The larger your tumer becomes, the faster it grows and the more difficult it is to treat.

---Metatisis the longer your prostate cancer goes untreated, the greater the chance it will spread to other organs of your body. When and if this occurs you enter into an entirely different medical realm.

The worries and concerns associated with a delay in treatment tend to be offset by the fact that prostate cancer generally develops slowly. On the other hand your case might be the exception. It's not unlike having a timebomb strapped to your waist and not knowing when it may detonate. A friend of mine likened it to having a monster in your closet. In any event the tests scheduled this week here in Jacksonville are designed in part to determine whether the cancer remains contained to my prostate.

Friday, December 19, 2008

Treatment Center Selection

I first heard of proton therapy by way of Bob Marckini's book, "You Can Beat Prostate Cancer." His book more than anything else convinced me proton therapy represented my best treatment option. Subsequent research has not dissuaded me from this personal choice. Doctors Ezee and Tuflov offered persuasive arguments for surgery and IMRT, respectively. Certainly other viable options exist depending on personal preference and individual circumstances. Any of us afflicted with this dreadful disease are inevitably confronted with difficult choices. There is no perfect solution, and most certainly there are no guarantees. In the final analysis you place your bet , roll the dice and hope to get double lucky.

I contacted four of the five proton centers in the United States. I made my decision primarily on which center could begin my treatment soonest. It turned out to be the University of Florida Proton Institute(UFPTI) located here in Jacksonville. Due either to an unfortunate miscommunication on their part or a regrettable misunderstanding on my part, the wait is considerably longer than anticipated. Even so the waiting period at UFPTI is no longer relative to the other treatment centers I contacted and briefer by a month in one instance. Preliminary measures are scheduled to begin here in Jacksonville next week.

Tuesday, December 16, 2008

A Third Opinion

While awaiting the arrival of the radiologist I spent a few minutes in his office chatting with his nurse. She asked me about the book I brought in with me, namely, Bob Marckini's "You Can Beat Prostate Cancer". I told her how profoundly this book had influenced my treatment deliberations. "Let me show it to Dr. Tuflov", she responded, "he might be interested". I handed her the book, and she left the room. She reentered momentarily, returned the book and informed me, Dr. Tuflov had already read the book. "He will be in shortly", she added.

Dr. Tuflov entered the room. He reminded me of an animated Richard Drefuss. He certainly resembled him in terms of stature, facial characteristics and self confident demeaner. "You should know right from the outset", he began, "you are not special. There are thousands of others out there just like you. In my 25+ years of experience I cannot tell you how many patients I have seen no different from you". "No sir", he said shaking his head for emphasis, "in no way are you special". Not knowing quite how to respond to Dr. Tuflov's opening remarks. I made a conscientous effort to maintain constructive eye contact and listen attentively. "But that is just me", he continued, "I raised my children wanting them to appreciate the fact that they were not special. No matter what their teachers and friends might tell them, I wanted them to realize the limits of their potentials. These comments served to ease my concern. It was not only me Dr. Tuflov did not want harboring thoughts of speciality.

To initiate a more fruitful direction to our discussion I thought it may be advantageous to provide Dr.Tuflov an opportunity to answer a medical question that had been puzzling me for awhile. A few weeks earlier a representative of one of the proton treatment centers that I had been in contact with expressed a particularly keen interest in the fact I had been diagnosed with diverticulosis a few years back. She did not explain nor did I ask how this could affect my treatment. "Why might this be important?", I asked Dr. Tuflov. Without hesitation with more energy than the inquiry seemed to warrent, he replied "BECAUSE YOU HAVE THE COLON OF A 72 YEAR OLD MAN FOR HEAVEN'S SAKE." I probably should have known. I raised no further questions.

With these issues out of the way we began to focus on more relevant matters. "It is my understanding your interest in proton therapy is based on Mr. Marckini's book," Dr. Tuflov started anew. "While I have not read his book (contrary to his nurse's aforementioned report) I have read hundreds of others just like it. Personal testimonials are of limited value. We need to rely on scientific data and medical research. I recently attended a symposium of radiologists. This nationwide panel of experts concluded clinical evidence does not support superiority of proton treatment over other forms of external beam radiation either in terms of long term outcomes or adverse side effects."

"Here at this facility we offer Intensity Modulated Radiation Therapy (IMRT). IMRT is the latest, most sophisticated form of radiation treatment. Unlike proton therapy which is profit oriented and investment driven, IMRT is scientifically based. More importantly IMRT possesses the following concrete advantages relative to proton therapy. It is more accessible, you can be treated locally here in Michigan, the waiting period is virtually nonexistant, we can get you started in two or three weeks and the treatment is far less expensive."

In his concluding remarks Dr. Tuflov chose to share his views on outcomes. "Are you familiar with the normal curve?" Fortunately due to a course in statistics 50 years ago I answered affirmatively. "Well then" he continued, "a sizable majority of patients treated for prostate cancer regardless of treatment method have a satisfactory outcome. A relative few patients are double lucky; we cure their cancer and they suffer few, if any, side effects. Then there are those who are doubly unlucky whose outcomes are considerably less favorable. Another important variable is how patients perceive their outcomes. Let me relate two actual case histories from my practise. I treated two patients whose outcomes fell toward the less favorable portion of the normal curve. One of these patients could not have been more appreciative. Though he could no longer have intercourse, he and his wife loved one another and found other ways to satisfy their sexual needs. This fellow was happy to be alive and for him life was good. The other patient whose outcome was quite similar reacted quite differently. He complained bitterly and called me every name in the book." Dr.Tuflov concluded his outcome commentary with the following observation, "Such is the nature of our business."


Wednesday, December 10, 2008

A Second Opinion

Dr.Ezee spoke so positively about prostatectomy and seed implantation and so negatively about proton therapy, I decided to consult another specialist. As mentioned earlier in this chronicle I attended two medical seminars as part of my research effort. An oncologist who specializes in prostate cancer by the name of Dr. Trucair conducted the first of these seminars. Dr. Trucair impressed me as being highly intelligent, well informed and deeply compassionate. In answer to a question I raised concerning my personal situation, Dr. Trucair advised me of how he would want his father treated under similar circumstances. This response struck me as being unusually empathic. Most physicians in my experience do not equate the treatment of their patients with how they would want close members of their family treated. I attended Dr. Trucair"s seminar prior to my diagnosis,i.e., while still hopeful I had nothing to worry about. By the end of the seminar I knew, if the need arose, Dr. Trucair was the type of physician I wanted on my treatment team.

I was not overly surprised that Dr. Trucair agreed to see me on short notice in a timely manner without a referral. He began the appointment by performing a mini-physical that included a fair amount of probing, prodding and thumping. He carefully examined by lymph nodes and listened to my heart and lungs through his stethoscope. Despite my recent back surgery and cancerous biopsy , Dr. Trucair announced his findings: "You are in very good health" He subsequently inquired "How can I be of service?" I summarized the results of my appointment with Dr Ezee and how enthusiastically he recommended either surgery or seed implantation. I also alluded to Dr. Ezee's comments concerning proton therapy. In the latter regard Dr. Trucair conjectured
Dr. Ezee may have based his conclusion on older forms of radiation treatment. "If I were you", Dr. Trucair continued, "I would not rule out surgery nor would I rule out radiation". "On the other hand," he confided, "you are not a candidate for hormone therapy nor do I recommend watching and waiting". The latter modalities are more appropriate for older or less healthy individuals who are not expected to outlive the progression of their disease(s). "And finally if you intend to pursue proton therapy, I recommend you consult a colleague of mine who knows everything there is to know about radiation." Since I trusted Dr. Trucair's judgement, and it seemed like the right thing to do, I readily agreed. Accordingly Dr. Trucair made the arrangements for yet another expert opinion.

Wednesday, December 3, 2008

A Definitive Diagnosis

As expected the urologist biopsied my prostate within an hour of my arrival. "Let's get to it," he said, "this will be quick and easy". From start to finish the procedure took about 30 minutes. In terms of discomfort it registered 3.5 on a pain scale ranging in level from 1 to 10.

A week later I received a call from Dr. Ezee's office. A member of his staff informed me the biopsy revealed one or more "anomalies" . "Is it cancer", I wanted to know? "I am sorry", she replied, "I am not authorized to disclose such matters over the phone. Dr. Ezee intends to discuss the results with you personally. We have arranged for you to meet with him on Friday, October 31, 2008". This conversation occurred on October 14 which meant a two and one half week delay before I would officially learn the outcome of my biopsy. " Under the circumstances that seems like an awfully long time to wait," I responded. "I am truly sorry", she replied "October 31 is the earliest possible date Dr. Ezee can see you". It seemed apparent that neither of us could do anything more; so we ended our discussion.

Upon reflection a two and one half week delay seemed wholly unreasonable and totally unacceptable. How to proceed became the question of the day. Should I contact Dr. Ezee directly, and plead my case, or should I contact my primary care physician and ask him to intervene? Neither of these options appealed to me .Remembering that Dr. Ezee practised in a clinic with several other urologists, I called his office later that same day and asked to speak to his nurse. I posed the following question: "Is there any chance that one of the other practitioners could see me sooner by working me into his/her schedule?" She agreed to investigate this possibility and get back to me. A few hours later she returned my call. Dr. Ezee arranged to see me the following Monday. My followup appointment would be in two and a half days rather than two and a half weeks.

"First the good news Mr. Oberlin" Dr. Ezee began, "only two of the twelve samples we took detected cancer. With a Gleason score of seven your results could have been far worse. Your cancer is only moderately aggressive, and I can almost guarantee you, it has not metastasized. I recommend robotic surgery. Unlike most other treatment modalities, adverse side effects show up immediately and most are reversible". "What kind of side effects can I expect", I wanted to know. "Roughly 50% of radical prostatectomy patients became impotent," he said. "Nearly all such patients experience a degree of incontinence, but typically this condition is temporary. Longer term incontinence can be ameliorated in a variety of ways." " What about impotence", I wondered, "can this be corrected with medication?" "In most cases no", he responded. Changing the direction of our conversation Dr. Ezee offered the following option. "If you prefer I can implant your prostate with radioactive seeds." "Seeds are easy", he added ."Whichever option you choose we can get this done in a matter of weeks. How would you like to proceed?" "Before deciding I would like to mull it over for a few days," I replied. Before we concluded I asked him what he thought of proton therapy. Dr. Ezee shook his head, with genuine concern, "once you injure your colon," he said, "it is extremely difficult to repair." On this relatively uneasy note, I thanked Dr. Ezee for his time and professional consideration.

Tuesday, November 25, 2008

Additional Research Results

As my research progressed it became increasingly apparent that of the two alternatives offered by my primary care physician, clearly, I made the wrong choice. The more prudent course of action would have been an immediate referral to a urologist. In retrospect the prospect of a biopsy probably influenced my initial decision.

In any event I learned a rapidly rising PSA is highly indicative of prostate cancer. Exploring the source of my sciatic pain necessitated additional blood work. By September 4, 2008 my PSA had risen to 3.74. By October l,2008 it had risen to 3.97. A distinct pattern had emerged. My PSA was rising at the rate of .20 every four weeks. Combined with the doubling that occurred during the prior three year period, I concluded these elevations met the criterion of a rapidly rising PSA. I expressed my concern to my primary care physician. He agreed. An appointment with a urologist followed shortly thereafter.

Monday, November 24, 2008

Preliminary Research Results

Researching prostate cancer and determining what can be done about it turned out to be an intimidating exercise. My effort included reading five or six books, viewing two tapes (on hormonal therapy), attending two medical seminars, surfing the Internet and interviewing several of my friends who survived their prostate cancer ordeals. I quit researching when the material tended toward redundancy. As for treatment options it seems fair to conclude there is no perfect solution. It also seems fair to say that one person's preferred choice may be wholly unsuited or unacceptable to the next individual.

In addition to doing nothing, known in the literature as watch and wait, localized prostate cancer can be treated in a variety of ways. The prostate can be frozen or it can be baked, i.e., by radioactive seed implantation or external beam radiation. The prostate can be removed either by scalpel or robotic scissors through the stomach wall or through a lateral incision in the perineum, i.e.,that narrow patch of skin nestled between the scrotum and anus. Yet another treatment choice is castration which can be accomplished surgically or chemically. None of these modalities offer a sure cure ,particularly the latter ,which is palliative in character. All treatments cause collateral damage ranging in severity from minor abnormalities to stone cold demise.

I urge anyone confronted with this disease to read Bob Marckini's book, "You Can Beat Prostate Cancer" Mr. Marckini touts proton therapy as the treatment of choice, and if you read his book you will understand why. Mr. Marckini successfully underwent proton therapy after conducting extensive research on the subject. Mr. Marckini has evolved as an eloquent spokesperson for and advocate of proton therapy. It is his book that introduced me to the proton therapy concept. It is his book more than anything else that convinced me proton therapy offered the best chance for a favorable outcome with the least likelihood for adverse side effects. Armed with Mr. Marckini's information and perspective I continued my journey.

Friday, November 21, 2008


Initial Indications:

My mental and emotional journey began in July of 2008. I had not seen my primary care doctor for three years. I discontinued my annual physicals because it seemed like a waste of every one's time to be found "perfectly healthy" year after year. Due to a severe case of sciatica, however, I scheduled an appointment to determine the cause of my pain and what could be done about it.

In addition to his findings regarding my back my doctor discovered that my PSA had doubled since I had seen him last. On April 4, 2005 my PSA was 1.39. By Aug.29, 2008 it had risen to 3.49. My doctor offered two alternatives. He could refer me to a urologist immediately for consultation, or we could retest in two months and determine an appropriate course of action. My impression based on our discussion was that I need not be overly concerned. After all my PSA was still within normal limits. I chose to wait; however, I began my research.

Thursday, November 20, 2008

Proton Don's Tumultuous Journey


This journal chronicles one man's experience with prostate cancer. It's objectives are threefold. It's primary purpose is to provide useful information to others like me or for those who may follow in my footsteps. I wish also to provide current information to my family and friends who have expressed an interest in being kept up-to-date. And thirdly for those few cyberspace surfers who stumble upon this site, I welcome you aboard. I hope you find the subject matter educational and/or entertaining.

The journey thus far has entailed numerous twists and turns with a great many surprises none of which have been any too pleasant. What the future holds only time will tell. The plan is as follows. While cooling my heels here in Jacksonville Florida, waiting for treatment to begin, I will trace my tumultuous journey through brief statements to be issued once or twice a week.When my treatment begins reports will be issued as the situation develops.