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Off to a shaky start. One of my early journal entries for your review, comment (and entertainment?).
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 conscientious 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 specialty.
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 warrant, 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 nonexistent, 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 practice. 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."
Don. Pretty interesting. Don't know when this early entry was made and maybe things have changed since, but I found it interesting. I had the IMRT treatment after surgery, and it is good to hear what his assessment of it was. I wonder if he still feels the same about Proton treatment, or if data now supports the hype, it has been given.
I also found interest in his statement about how a patient's attitude can change the acceptance of treatment outcome. I have tried hard to be really careful to not criticize caregivers for the outcomes we experience and in fact have wondered what impact it might have on them as they treat us. They know what the results of the treatment will do to us. I would hope they all manage to fortify themselves against any feeling of "remorse" (for lack of a better word) for what their treatments will take away from us. We all mourn what we have lost to this disease and have to remember it was the fault of the disease, NOT the treatment. We have to remind ourselves that it is better to be alive and mourning our losses than to be DEAD from an untreated disease. I know of one case where the person refused treatment in favor of quality of life. He got a couple years of quality life alright and then a couple years of misery for him and his family before he died from the disease. I think of that often now as I have reached and surpassed the eight-year guestimate my Urologist gave me if I left it untreated. I much prefer my situation now to being DEAD! Jon.
Your thoughtful response is much appreciated. All of us react differently to our PCa and caregivers.
I suspect Dr. Tuflov's opinion is much the same now as it was then. You know doubt noticed he did not address relative effectiveness of these two treatments.
Thank you so much for your perspective, caring and sharing.