The tome also reflects on his own diagnosis of cancer and how it influenced his practice.
In a recently published book, one pediatric oncologist with a 45-year career reflects on the lessons he learned in his field and the advancements made to treat children with cancer, but also upon his own experience as a patient with lymphoma and as a parent of a patient with thyroid cancer.
Pediatric oncologist Dr. Michael Weiner wrote the book “Living Cancer: Stories from an Oncologist, Father, and Survivor,” where he discusses personal experiences with patients and with cancer itself.
“The thoughts that you have, the things that course through your mind that keep you up at night, your concerns, your worries, are similar to what every patient undergoes. Everyone has the same issues. Am I going to tolerate the therapy? Is the therapy going to work? Am I going to be a survivor? Is the disease going to come back? These are thoughts that everyone has. They're not unique to anyone,” Weiner, who is the former chief of the division of pediatric oncology at Columbia University Irving Medical Center in New York, said in an interview with CURE®. “And I wanted to demonstrate to people that their situation, their experience, their cancer journey was similar to what others experienced and hopefully, people can learn from it. I thought the shared experience concept would be very, very worthwhile and worth telling those stories.”
CURE® spoke with Weiner about his book, career and how his daughter’s diagnosis of cancer, as well as his own, influenced his practice.
Weiner: I have had a very long, fascinating career. I first became interested in oncology in medical school when one of the professors and I developed a relationship (he as a mentor and obviously myself as his student) and he was the director of oncology. At that time, in the late 1960s and early 1970s, the field of pediatric oncology was really just beginning. So he and his colleagues were caring for children that came to our hospital. And I'll never forget when he introduced himself to a young patient — about five or six years old — who had acute lymphoblastic leukemia, and he said to the family that this diagnosis is tantamount to a death sentence. And I found that comment to be very unsettling. No. 1, I didn't agree with it, and I still don't agree with the concept of taking hope away from patients and families. I think that's very important. But I also viewed it as a tremendous opportunity to be part of a new field: pediatric cancer, caring for patients with malignancies and their families. And I really never looked back. At that moment in time, I decided to become a pediatric oncologist.
I frequently am asked by our residents and fellows at Columbia to shed light on the history of pediatric oncology. And it's an interesting talk because they really don't appreciate, in the 21st century, what it was like 40 to 50 years ago. At that time, most children with cancer did succumb to their illness. But I think there have been several milestone breakthroughs that I think have contributed to the ever-increasing cure rate of children. The first is the formation of the cooperative groups, the Children's Cancer group, the Pediatric Oncology Group, which ultimately merged to become the Children's Oncology Group. But there have been many discoveries that I thought really contributed. One was our better understanding of antibiotics. Another was the innovation of using bactrim or septra to prevent pneumocystis pneumonia, which prior to the use of this particular drug, really was a terrible illness in patients with a high mortality rate. The identification that leukemia could enter the cerebral spinal fluid and need to be dealt with in a prophylactic manner and treated was pivotal. And also the varicella vaccine, or the treatment of varicella initially with high-dose immune globulin and then to the vaccine, which has virtually eliminated chickenpox as an illness that patients with cancer would be prone to.
So there have been a number of discoveries and supportive care measures that have made a measurable difference. You know, it's also interesting that in a 30- (to) 40-year period of time since I've been practicing as a pediatric oncologist, the number of new drugs for the treatment of illnesses like acute lymphoblastic leukemia and some lymphomas have not really increased. We still use the same drugs, and we use them much better — of that, there's no question. We understand them. We understand the side effects, we understand dosing, but it's really been the supportive care measures I think that have made a big difference in outcome.
As you can imagine, I've cared for thousands of patients and families in a 45-year career. And I've had very, very rich and memorable experiences with many, and I recall many of the patients and children. The stories that I share in my book … were those that were really most memorable to me. The book is not a self-help book. It's not a book about how to manage as a patient with cancer. It's intended to inspire and demonstrate the resilience of the human spirit. The message that I wanted to impart is that (patients with cancer) are not alone.
I think patience. It allowed me to impart a certain calm to patients and families. You know, most of my career, I have cared for children with leukemia and lymphoma. That really has been the area of expertise that I have focused on for really over 30 years. So one of the things that has been important has been that those illnesses — leukemia and lymphoma — have been diseases that have seen among the greatest improvement in outcome and survival. Early in my career, in the ‘70s and early ‘80s, it was not uncommon to have to go into the hospital in the middle of the night and be with a family who just lost their child. Fortunately, I haven't had to do that very often because leukemia and lymphomas, Hodgkin's disease are among those illnesses that have extraordinary treatment. And in some small way, it's been great to be part of that.
I noticed a lymph node in in my neck, and one of the things that a pediatric oncologist becomes quite expert at — in particular, one whose career is primarily caring for patients with leukemia and lymphoma — is to ascertain and define a lymph node. And this particular lymph node, to me, … on the right side of my neck, did not feel normal. And the first time I went to see one of the surgeons, he said, “Well, let's wait two or three weeks,” and I said, “John, take it out. It's not normal.” We went into the treatment room under local anesthesia, (and) he removed the lymph node. Two days later, it came back as a follicular lymphoma. Fortunately, it was low grade and it did not spread. There was one other small node in my neck. It was very, very nearby, adjacent to the original. We decided to use some immunotherapy and radiation treatment, and that was an eye-opening experience for me.
As you can imagine, I could have chosen any doctor not only at Columbia, but really in New York City and beyond. It wasn't important to me to see the expert, the best doctor; what was important to me was to find a doctor who would be my partner, who would share experiences with me, who would take me on the cancer journey and we would go down that road together. Accessibility, patience and willingness to be my partner, those were the issues that were important to me. And I think that that's something that all patients should strive for when they choose their doctor: trust, patience, a partner. So we chose a treatment plan and part of the treatment plan was radiation to my neck. And wouldn't you know it, several years later, I was diagnosed with thyroid cancer. So this April, I had a total thyroidectomy for the same type of thyroid cancer — papillary thyroid cancer — that my daughter had. Now, I'm certain that as an oncologist, I think I had micro-malignant papillary nodules in my thyroid, but the radiation is a known inducer. And I think the radiation I received to my neck certainly contributed to that. So I dealt with the thyroid cancer. And unfortunately, about two or three months ago, I had a recurrence of the follicular lymphoma. I'm back on treatment with that.
But there are a couple of things that I think it's worthy to mention with respect to (patients with cancer) and their treatment. Number one, I felt alone. When I was in the chemotherapy suite receiving treatment, I was alone. My wife might have been there. There were nurses there. There were other people around, but you're alone. You're isolated. Cancer is an isolating illness. When I was lying on that cold table in the radiation therapy suite and having that big arc move over my neck, over my body, and you had to be still, strapped down to the table, bolted to the table with a mask so you wouldn't move. You're alone. There's no one else in that room. Cancer is a very isolating experience. There's a lot of attempts to try to get people to participate in group therapies, psychotherapy, meditation, nutritional things of that sort, and I did it myself. And I would encourage people to do it because it's empowering for patients to be able to participate in your care. You trust your doctor to prescribe the right treatment, but you, as a cancer patient, must do everything you possibly can to make yourself well. And I think that is a very, very important component of managing and getting through that cancer experience.
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