The Way Esophageal Patients Can Best
Be Helped By Medical Professionals

A letter to an oncologist from Tom Haynes
August, 2002

My name is Thomas G. Haynes and I apologize up front if the story/facts I wish to relay to you are somewhat lengthy. I do not want it to appear preachy, as I do not as a professional have to face the multiple grief you have to as a physician treating seriously ill cancer patients, most assuredly losing more than you'd like to have to. I do wish to provide you with some of the feelings and fears a seriously ill cancer patient goes through, hopefully with some facts from the side you've never been on and a little bit of my southern humor, if I can muster it.

I am an esophageal cancer survivor of approximately 5 3/4 years. My initial biopsies stated adenocarcinoma and tumor-in-situ, but I may never have been fully staged, as most major EC treatment centers might have done, e.g.- never had EUS [endoscopic ultrasound]. I did go through a barium swallow (at which the radiologist announced to me that I had malignant EC), a CT scan which geographically demonstrated a tumor in the distal third of my esophagus lapping into the internal diameter of my esophagus, and an endoscopy that captured 7 biopsies and measured a 4 X 1 centimeter tumor. The radiologist was a little premature, but after 30-40 seconds I appreciated his honesty. The biopsies did come back positive for adenocarcinoma, after my Gastroenterologist harvested them and had them analyzed.

Unlike many EC patients, I had a 1st cousin who was a physician and Radiologist, who accepted calls from all of my diagnosing physicians during diagnosis, advising me of the layman's definitions and advising exactly what I was facing. I was scared [expletive deleted] from day one but had a mindset that I would fight from day one. As I stated, I was never sure of my early staging and my physicians never told me what it was. My first cousin and my research told me I was facing a serious fight that 85+% don't survive more than 5 years once diagnosed.

When first diagnosed, I was sent to my PCP's office where he apologized to me, because I had contracted EC. My immediate words to him were to assure him that he had no responsibility and owed me no apology, having been a good friend and physician in the past. I first came to him after seeing a stiff Hepatologist/Oncologist for many years as my PCP. I left him, because he seemed stiff and uncaring and because we never developed a friendly physician-patient relationship. When I first met my new PCP, he introduced himself as Dr. Greene. I said, hello, my name is Tom. If you want to be my new PCP, may I call you by your first name, as I wish you to call me by mine. He said of course if that made me more comfortable. Been with this wonderful physician for 12 years or so, because we are friends and because he really shows that he cares and is compassionate. The day I was diagnosed with EC he also sent me to a Gastroenterologist I'd shunned previously, because the man had kept me waiting to see him once for 2 hours in his waiting room. My PCP said I needed to drop my bias and see the Gastro, because he was good and would not keep me waiting this time. I saw him and an endoscope was set up. That day I also saw my Medical Oncologist and a Radiologist, who were most helpful and supportive. I asked each to shoot me no lines, because I wanted to be in the thick of my EC treatment. I finished the day back at my PCPs with a full course of prescribed EC treatment, awaiting my consult with my 1st cousin and a week off for Thanksgiving to inform others, think, pray for the strength to make the right decisions for my family, and to pray for honest consult from the physicians who would eventually treat me.

I knew little of staging at the time or what it meant. I went through the CT and endoscopy, carefully reading the biopsy and CT report, requesting assistance in understanding it from my 1st cousin, still scared [expletive deleted] but confident in the information and discussion received from all physicians involved. Eventually, we settled on the trimodal treatment protocol currently in use at M.D. Anderson in Houston, or I should say I did, with great consult from my physicians.

You have to understand as a worldwide troubleshooting engineer that I am definitely proactive in my treatment and somewhat of a control freak when I'm told I have cancer. Believe it or not there are a whole lot of us out there, cancer patients who have to feel in control of the serious treatment we are about to get. To most of us there is no worse feeling than being second-chair in our own treatment. We must feel and be in control of our treatment for this serious disease, but desperately need the careful guidance and skillfully compassionate wisdom of you guys. There is no worse feeling for a cancer patient than to feel totally out of control. You might as well take hope away, as take any feeling of control away from an EC patient.

That extends to the total diagnostic and treatment package. I have learned and frequently advise other EC patients on the EC Group online to select a great treatment team led by a great, compassionate Medical Oncologist, including a great PCP, great Gastroenterologist, great Rad Oncologist and eventually a great abdominal/thoracic Surgeon. Compassion is the first requirement for all involved. Keeping the patient fully informed of all potential diagnostic and treatment options is the second requirement. The patient doing a lot of research is the third requirement. Last but not least is my typical recommendation that patients find dx and treatment physicians with a great deal of experience and history in diagnosing and treating EC patients. I find great virtue in patients who are able to find dx and treatment at large cancer/teaching facilities, because facilities are usually better and critical care physicians are on site 24/7.

But, I did not have all of the above. What I did have was a team of involved and very compassionate physicians from day one that wouldn't have circumvented my total involvement from day one. They always kept me informed of all options. They never made major decisions about my treatment without involving me, and I am sure knowing that I wanted to fight, none would have ever made a decision just to give me palliative treatment, without first talking to me, because all had taken the time to talk to me and share information about treatment and ask me what I wanted to do, given their advise.

My PCP, Gastroenterologist, barium swallow Radiologist, and Medical Oncologist were all with Mecklenburg Medical Group in Charlotte, NC. My Radiation Oncologist was with Carolinas Medical Center in Charlotte which is associated with MMG. My CT/PET organization was Charlotte Radiology. And my Surgeon was a most compassionate man with Sanger Clinic in Charlotte. So, you see, I didn't go to a large, teaching, university related facility like Mayo or Johns Hopkins or M.D. Anderson or Duke Or Emory. A lot of my physicians were from a group probably similar to yours. But they were an informative, compassionate, patient-involved and educative lot from the beginning, none of whom ever cut me out of the information loop or who would have ever placed me on or told me I was on palliative care months after treatment began.

With a disease like Esophageal Cancer HOPE is all we have at times. That hope depends on an open and honest relationship with the head of our treatment team, preferably a Medical Oncologist, for frequently the majority of us have to depend on physicians like YOU to give us the hope we so desperately need at times and the best skills you can muster. We find that Surgeons do not frequently make good team leaders, because of a tendency to be "cowboys" and say "we got it all", frequently leading some to avoid seeing a Med Onc at the outset or post-surgery. I firmly believe a great Medical Oncologist is our best HOPE at the outset to setup excellent treatment from the outset, taking all into consideration.

PLEASE DON'T LEAVE THE EC PATIENT OUT OF THE LOOP OR ADVISE PALLIATIVE IS THE COURSE OF TREATMENT WITHOUT TALKING IT OVER WITH US FIRST.

We beseech you to involve us in that which may be our last HOPE for cure. Our little online EC Group has over 1000+ survivors, caregivers, and family members participating on behalf of patients. We also have a lot of surviving and healthy Stage 3 and 4 patients who rail at the idea of new EC patients reading the stories of so many who have had and been supported in their HOPE by COMPASSIONATE physicians and this group which concentrates on giving HOPE,when advised of a physician who incompassionately takes a Stage 3 or 4 patient's HOPE away by placing the patient on palliative care without informing the patient or the patient's family. Please don't take away HOPE. Please don't take away CONTROL from EC or other cancer patients. Please keep us INFORMED and in the loop. We need a COMPASSIONATE friend/physician from day one.

I am sure with your other Medical education you were taught the virtues of compassionate treatment. This is another part of your education. I don't think you could hear from a more involved, caring and compassionate group about the proper care of EC patients than from a large group of EC survivors. I also know Medical Oncology is a tough field that teaches you to put your feelings away, if you want to survive in the profession. I have great compassion for what you must endure as a caring physician of cancer patients every day. Please help us to lead EC patients to better, more compassionate treatment. We have enough hills to climb already.

Sincerely,
Thomas G. Haynes

[Photograph: Tom and Joyce Haynes - July 27, 2002 - Tom's Birthday]