• 2/12/2007
  • California, USA
  • Daniel Borenstein
  • ContraCosta Times (www.contracostatimes.com)

(Note: This is the second of a four part series.)

When I began my cancer therapy, I didn’t understand the differences among the doctors who would be caring for me. I didn’t appreciate that when a patient receives cutting-edge treatment, he must be ready for changes in plans along the way. And I didn’t understand that, in the end, I was going to have to make the tough decisions even though I started my treatment without a basic understanding of cancer treatments.

I quickly learned that a “primary” is the site where the cancer originates, and that cancer can migrate, or “metastasize,” to other parts of the body. In my case, the “metastasis,” the site of the migration, was obvious. There was a bulge, a cyst, on the right side of my neck. But the microscopic primary was never located. The doctors didn’t know where my cancer began. As a result, they disagreed on my treatment.

My wife was a doctor who could explain the medicine to me in simple terms. And my oncologist, Randy Oyer, was a good friend who wasn’t put off by my flurry of inquisitive e-mails.

Randy planned to hit me with a heavy dose of chemotherapy and then follow with radiation to mop up bad cells in key areas of my mouth and neck. The regimen of starting with three potent chemo drugs for head-and-neck cancers like mine was new. It had been tried only for a few years, and the early studies indicated it worked well.

For Randy, this was a no-brainer. The more cancer one can wipe out with chemo, with which most of the side effects are temporary, the less need for radiation, which can have painful and lasting consequences, or invasive surgery.

At first, I didn’t appreciate that there are different types of oncologists. Randy is a “medical” oncologist, the sort of doctor who administers chemotherapy to treat cancer. As I learned, one must not confuse him with a radiation oncologist.

Although choosing Randy as my doctor for my chemotherapy was easy because he was a good friend, I realized soon after I started my treatment that I would need to pick a radiation oncologist — and make key decisions about where to radiate. I had no idea that I would travel across the country searching for the answers.

On May 25, 2005, after two rounds of chemotherapy, I had my second body scan, the first one since starting treatment. The results: The visible cancerous node had shrunk to 30 percent of its original size. And its “brightness” on the scan, the measure of the intensity of the cancer, was similarly about one-third the pretreatment level.

“It’s a huge, huge success for the chemotherapy,” Randy told me when I saw him the next day.

Randy had been reviewing the latest studies on treatment for head-and-neck cancer like mine. As he put it, “I want to hit you with the kitchen sink once” to minimize the chances of the cancer returning. The original plan was three rounds of chemotherapy, which would take nine weeks, followed by six to seven weeks of daily radiation treatment. But Randy was adjusting my therapy, making it more intense than originally planned.

First, he explained, studies showed that the radiation would be more effective if given concurrently with additional chemotherapy. So — and here was the big surprise — when I underwent the radiation phase, I would also receive more chemo. The radiation therapy would be daily Monday through Friday for six to seven weeks. The concurrent chemo would be administered weekly.

Second, during the radiation, I would receive weekly doses of Erbitux, better known as the Martha Stewart drug. Recall that Stewart went to jail because she lied to investigators about using insider information. She used that information to dump her shares of ImClone, the company that manufactures Erbitux. She sold the stock in December 2001 the day before the FDA rejected the company’s application for approval of the drug. More than two years later, Erbitux, which slows tumor growth, finally received federal approval.

I also would receive daily injections of Amifostine, a drug that would make me nauseous but help protect me from the toxicity of the radiation. For example, it would protect my salivary glands and reduce, but not eliminate, the chances that I would be left with permanent dry mouth from the radiation.

Randy was not a radiation expert. So we agreed that, before I started my radiation at Alta Bates’ Herrick campus in Berkeley, I would go to the UC San Francisco medical center for a consultation.

Imagine my surprise when Jeanne Quivey, a leading radiation oncologist at UCSF, told me that the preradiation chemotherapy I had endured was a waste of time.

Since then, I’ve come to fully appreciate that medicine can be as much an art as a science; that some doctors want to be on the cutting edge and others want to use the most-proven treatment.

To Quivey, there was no doubt about the best tool for fixing my cancer. “We think the curative treatment is the radiation,” she said. At her institution, patients like me were treated primarily with radiation, sometimes with simultaneous chemotherapy.

She was quite clear: Chemo in advance of radiation does not add to the cure rate for cancers like mine. Actually, she added, one study found it was harmful. Until there was a change in the survival rate, UCSF would not use chemotherapy before radiation.

Searching to make sense of this surprise, I noted that there seemed to be a split in the medical community on the treatment. Quivey was unyielding. “There might be a split in the community,” she said, “but the data is on my side.”

This wasn’t just a theoretical dispute. This was a core disagreement about the underlying rationale of my therapy that also extended to other key questions, such as how much of my head and neck to irradiate, what chemotherapy to give me at the same time, and what drugs, if any, I should receive during the treatment to protect my salivary glands from the radiation.

What if Quivey were right? What if Randy were wrong? There was no compromise position between them. How could I receive treatment from a medical oncologist and a radiation oncologist if they weren’t working from the same playbook?

Randy was surprised to hear my account of the appointment with Quivey. To be sure, he had warned me that he was using new therapies. He had told me the data were still evolving. And if we waited for conclusive studies on survival rates, that would be years down the line — way too late to help me.

Moreover, Randy wasn’t just making up the three-drug preradiation chemo regimen as he went along. It was being studied and used at one of the leading hospitals in the nation — the Dana-Farber Cancer Institute, affiliated with Harvard University, in Boston. I had seen some of the research, and Randy had been following it carefully. We decided I should see Roy Tishler, the radiation oncologist on that research team.

After a week of phone calls and e-mails, the appointment was set. I would see Tishler and Dr. Marshall Posner, director of the Head and Neck Oncology program at Dana-Farber.

Meanwhile, I started reading medical studies, including the one Quivey cited as showing advance chemo could be harmful. That research, it turned out, looked at patients who were treated from 1965 to 1993. Those patients didn’t receive the three-drug treatment I was given. One of those drugs, Taxotere, wasn’t available back then.

As the doctors debated my future, there was good news about the effects of the chemotherapy I had received. My third body scan showed no cancer activity. It didn’t mean I was cancer-free, only that the levels were below what the scan could detect.

The one thing the doctors all agreed on was that I still needed the radiation — and the sooner, the better. But the devil was in the details.

That’s why I flew to Boston.