From Doctor to Patient: Pediatric Oncologist Share His Cancer Experience

After more than 40 years of treating patients with cancer, Dr. Michael Weiner received a cancer diagnosis of his own – as did his daughter.

In his recently published book, “Living Cancer: Stories from an Oncologist, Father, and Survivor,” he explains the experience of moving from doctor to patient and caregiver. He also discussed all of these issues and more in a recent interview with Cancer Horizons’ sister publication, CURE®. 

CURE®: Can you talk about your career in pediatric oncology, and how you got into the field?

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 is a mentor and obviously (I was) his student, and he was the director of oncology. At that time in the late 1960s and early 1970s, the field of pediatric was 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. Number one, 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. I really never looked back. At that moment in time, I decided to become a pediatric oncologist. I never practiced pediatrics. I went right from my pediatric residency into fellowship. And I’ve had a wonderful, wonderful career.

What was going through your mind – as both an oncologist and a father – when your daughter was diagnosed with thyroid cancer?

We tried very hard to have a daughter-father relationship, not a daughter-doctor relationship. Fortunately, there are many excellent, superb physicians at Columbia, which is where I’ve worked for so many years, and I knew that she was going to get excellent care, but she only had one father. I wanted to be that person and to be there for her.

I remember, my daughter is a pretty disciplined person and leaves no stone uncovered. So we were Googling thyroid cancer and treatments and outcome presentations all night long. Together, we learned, so by the time we went to see the caregivers, the surgeon and the endocrinologist, we both had a very good understanding. And there were no surprises. And that’s something that I would encourage patients to do. There is so much information available online today. And it behooves patients to become as informed as they possibly can. One must be careful to be able to sort through what is real and what is not. There’s a lot of information that can be terrifying, and it’s just flat out wrong. But if you’re able to sort through it and ask questions and bring the article or bring the Google piece that you read, I think that there’s a lot to be gained by doing that.

Then you received a diagnosis as well. Can you discuss 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 to me. 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, (and) under local anesthesia, he removed the lymph node. Two days later, it came back as a follicular lymphoma.

Fortunately, it was low grade … there was one other small node in my neck, it was 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: Trusts patients, 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 that as an oncologist, I think I had micro malignant papillary nodules in my thyroid, and 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. So 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 patient (with cancer) must do everything you possibly can to make yourself well. And I think that is a very important component of managing and getting through that cancer experience.

 You wrote a book about these experiences. What can readers expect from your book?

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. And the stories that I share in my book, “Living Cancer: Stories of an Oncologist, Father, Survivor,” were those that were really most memorable to me. This 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. 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. 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. Interestingly, as a pediatric oncologist, my own daughter developed cancer and to be sitting on the other side of the desk and have the surgeon or the radiologist explain what is going to be done – procedures and surgery and radioactive iodine – was really a very powerful experience for my wife and me. And it really added to the way that I treated my own patients. It made me more understanding it made me more tolerable. It made me more patient. I repeat over and over and over the important concepts when you’re sitting in a room and someone is telling you for the first time that you have cancer. That’s about all you hear, nothing else really registers. So it’s important. It’s incumbent upon physicians and nurses who deal with patients on a daily basis to be certain that patients understand. I encourage my patients to take notes, to write down questions they may have. I give patients my cell phone. I don’t want them to be troubled and not have their questions answered. It’s more important to me to deal with the issue at that moment in time, rather to allow them to have ideas or thoughts that fester and are upsetting to them. Everyone’s respectful. I don’t get called in the middle of the night. It’s been a formula that’s worked for me.

 

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