New Book Written By Former Pediatric Oncologist Emphasizes Patients with Cancer ‘Are Not Alone’

In a recently published book, a pediatric oncologist with a career spanning 45 years reflects on lessons learned in his field and advances made in treating children with cancer, as well as 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, in which he discusses personal experiences with patients and with cancer itself.

“The thoughts you have, the things running through your head that keep you up at night, your worries, your worries, are similar to what every patient goes through. Everyone has the same problems. Will I tolerate the therapy? Will the therapy work? Will I become a survivor? Will the disease come back? These are thoughts that everyone has. They are not unique to anyone,” Weiner, 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 show people that their situation, their experience, their cancer journey was similar to what others have gone through and hopefully people can learn from it. I thought the concept of shared experiences would be very, very rewarding and worth telling those stories.”

CURE® spoke with Weiner about his book, career, and how his daughter’s cancer diagnosis, as well as his own, affected his practice.

CURE®: Can you tell me more about your 45-year career?

Weiner: I’ve 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 (him as a mentor and of course me as his student) and he was the director of oncology. At the time, in the late 1960s and early 1970s, the field of pediatric oncology was just beginning. So he and his colleagues took care of children who 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 told the family that this diagnosis is tantamount to a death sentence. And I found that comment very disturbing. New. 1, I disagreed, and I still disagree with the concept of taking hope away from patients and families. I think that’s very important. But I also saw it as a great opportunity to be part of a new field: childhood cancer, caring for patients with malignancies and their families. And I’ve never really looked back. It was then that I decided to become a pediatric oncologist.

What are some of the pivotal moments in your career?

I am regularly asked by our residents and fellows in Columbia to shed light on the history of pediatric oncology. And it’s an interesting conversation because in the 21st century they really don’t appreciate what it was like 40 to 50 years ago. At that time, most children with cancer succumbed to their disease. But I think there have been several milestone breakthroughs that I believe have contributed to the ever-increasing cure rate for children. The first is the formation of the cooperative groups, the pediatric cancer group, the pediatric oncology group, which eventually merged into the pediatric oncology group. But there have been many discoveries that I thought really contributed to it. One was our better understanding of antibiotics. Another was the innovation of using bactrim or septra to prevent pneumocystis pneumonia, which before the use of this particular drug was a really terrible disease in patients with a high mortality rate. The identification that leukemia can enter the cerebrospinal fluid and should be treated and treated prophylactically was crucial. And also the varicella vaccine, or the treatment of varicella, initially with a high dose of immunoglobulin and then to the vaccine, which has virtually eliminated chickenpox as a disease that cancer patients 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 period of 30 (to) 40 years since I practiced as a pediatric oncologist, the number of new drugs to treat diseases like acute lymphoblastic leukemia and some lymphomas hasn’t really increased. We’re still on the same drugs, and we’re using them much better – there’s no doubt about that. We understand them. We understand the side effects, we understand the dosage, but it’s really the supportive care measures that I think have made a big difference in the outcome.

You recently published your book “Living Cancer: Stories from an Oncologist, Father, and Survivor.” Can you tell me more about it?

As you can imagine, in a career spanning 45 years I have cared for thousands of patients and families. And I’ve had very, very rich and memorable experiences with many, and I remember a lot of the patients and children. The stories I share in my book… were the ones that stayed with me the most. The book is not a self-help book. It is not a book about how to deal with cancer as a patient. It is intended to inspire and demonstrate the resilience of the human spirit. The message I wanted to give is that (cancer patients) are not alone.

Your daughter was diagnosed with thyroid cancer from 2000 to 2001. How did that affect you as a pediatric oncologist?

I think patience. It allowed me to give a certain peace of mind to patients and families. You know, for most of my career I’ve cared for children with leukemia and lymphoma. That is really the field I have focused on for over 30 years. So one of the things that’s been important is that those diseases — leukemia and lymphoma — have been diseases that led to the greatest improvement in outcome and survival. Early in my career, in the 1970s and early 1980s, it was not uncommon to go to the hospital in the middle of the night and be with a family that had just lost their child. Fortunately, I didn’t have to do that often, because leukemia and lymphoma, Hodgkin’s disease, are among those diseases that have extraordinary treatment. And somehow it was great to be a part of that.

You have also been diagnosed with cancer. Can you tell me more about your cancer journey and what you learned from it?

I noticed a lymph node in my neck, and one of the things that a pediatric oncologist gets really good at — especially one whose career primarily cares for patients with leukemia and lymphoma — is identifying and defining a lymph node. And this particular lymph node, to me, … on the right side of my neck, didn’t feel normal. And the first time I went to 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 anaesthetic, (and) he removed the lymph node. Two days later it came back as a follicular lymphoma. Luckily it was low grade and didn’t spread. There was still a small knot in my neck. It was very, very close, next to the original.We decided to use some immunotherapy and radiation, and that was an eye-opening experience for me.

As you can imagine, I could have picked any doctor, not just in Columbia, but really in New York City and beyond. It was not 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 were the things that were important to me. And I think 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, a few years later I was diagnosed with thyroid cancer. So in April, I had a total thyroidectomy for the same type of thyroid cancer — papillary thyroid cancer — that my daughter had. I’m sure 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 got on my neck certainly contributed to that. So I treated the thyroid cancer. And unfortunately I had a recurrence of the follicular lymphoma about two or three months ago. I am in treatment again.

But there are a few things I think are worth mentioning regarding (cancer patients) and their treatment. First, I felt alone. When I was treated in the chemotherapy suite, I was alone. My wife could have been there. There were nurses. There were other people around, but you are alone. You are isolated. Cancer is an isolating disease. When I was laying on that cold table in the radiotherapy room and that big arc was moving across my neck, over my body, and you had to be still, strapped to the table, bolted to the table with a mask so you wouldn’t move. You are alone. There is no one else in that room. Cancer is a very isolating experience. There have been many attempts to get people to participate in group therapies, psychotherapy, meditation, those kinds of nutritional things, and I’ve done it myself. And I would encourage people to do it because it allows the patients to participate in your care. You trust your doctor to prescribe the right treatment, but you as a cancer patient must do everything you can to get yourself better. And I think that’s a really, really important part of managing and getting through that cancer experience.

For more news on cancer updates, research and education, don’t forget to subscribe to the CURE® newsletters here.

Comments are closed.