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

(Note: this is the third of a four part series)

Setting the boundaries for the next phase of my cancer therapy was all about balancing long-term risk — weighing the chances of the disease recurring against the permanent side effects of extra radiation.

No matter which way I went, there was no certainty. The data were sketchy and the doctors disagreed on the best option. They had one consistent message: I needed to pick my path. As one doctor put it: “Ultimately, you have to decide. You have to do what feels most comfortable to you.”

I didn’t think I would ever feel comfortable with the decision. I felt totally unqualified to make it.

For guidance, I visited physicians in the East Bay, as well as the UC San Francisco medical school and the Dana-Farber Cancer Institute in Boston.

The East Coast doctors endorsed the cutting-edge chemotherapy I had received. That was something I needed to hear after a UCSF doctor suggested it had been a waste of time. It enabled me to put that issue behind me and move on to the big decision: Whether to irradiate one or both sides of my head and neck, and whether to include the nasal passages above my palate.

I had what was broadly called head-and-neck cancer, usually found in smokers or heavy drinkers. I was never much of a drinker, and none of the doctors thought that my teenage smoking for less than a year was the cause of my cancer. Pathologists speculated on other sources. But there was no way to know for sure.

Not knowing the cause made it hard to determine the original cancer site. Not knowing the site, in turn, complicated the decision of where to direct the radiation.

The original cancer site, “the primary,” which probably was very small, had never been located. The doctors agreed that the therapy should include the site of the metastasis in my right neck. They also concurred on treating the base of my tongue, right tonsil and right side of my throat because those were possible primary sites or locations where the cancer might have migrated.

The doctors disagreed on whether to include the back of my nasal passages. And they were divided on whether to radiate the left side of my head and neck. At issue was whether the cancer could have originated on the left side and traveled across the midline to the metastasis on the right. If it did, there might have been microscopic cancer remaining on the left side — cancer that could migrate and blossom again if left untreated.

So what was the downside of covering it all with radiation, just to be safe? Answer: Radiation has permanent side effects. I was warned that my salivary glands would be affected. That meant I could have a dry mouth the rest of my life, requiring that I carry water wherever I go and leaving me at risk for major dental problems. The wider the radiation field, the more glands could be affected and the drier my mouth might be.

I would also have a greater risk of a stroke later in life because radiation of my neck would also hit my carotid arteries. The risk, albeit small, was unavoidable. My wife, a pathologist, warned me that radiation to the back of my nasal passages could also affect my brain. This wouldn’t make me any smarter.

I have friends, cancer survivors, who have experienced similar effects. One who had radiation that weakened her artery suffered a stroke three decades later. Another needed radiation to his heart and later had a heart attack. My uncle had radiation for lung cancer and a decade later had new cancer probably caused by the original treatment. That’s right: The radiation itself can cause cancer later in life.

So why radiate at all? After all, I had received new, very powerful chemotherapy that radically shrank the metastasis in my neck. Didn’t it do the same to any other cancer cells that might have been in my body? It probably did, said Randy Oyer, my medical oncologist. But doctors didn’t have confidence that the new chemotherapy alone would prevent the disease from returning. “Once you achieve a high level of success” with new drugs, Randy said, “it’s hard to know what to leave out.”

The chemotherapy treatment was so new that there was no data on whether it could be used in lieu of radiation instead of in tandem. I needed both, Randy explained. “What people are saying to you is this is what the standard of care is. It’s not going to be the standard of care in five years. That’s what it is today. You need to be treated before the definitive answers will be in.”

Fear also affected my decision. What would be the therapy if the cancer recurred? Doctors call this the “salvage” treatment — sort of a charming expression, isn’t it? In my case, it would not be a pretty picture, said Patrick Swift, the director of radiation oncology at Alta Bates hospital in Berkeley, who was in charge of my radiation treatment.

Everyone agreed that he should use a new radiation technology that allowed him to better control the beams and avoid many critical organs. But he couldn’t use it for one side of the head and neck and then come back years later and easily line it up for the other. The danger was overlapping the original field of radiation, creating an area that had received a double dose. It would be much easier to do both sides at the same time.

If I received treatment for just one side and the cancer came back on the other, “Dan will be in an extremely tough position,” Swift wrote. “… We will be forced to use higher doses of radiation and risk overlap with far more consequences.” The chances of controlling the cancer would be much less. I faced a big decision. I wanted to know that I got it right — that I made the best decision on the radiation field. But, as my wife warned me, “No matter how badly you want it, you’re not going to get ultimate truth.”

After a series of lengthy e-mail exchanges, reviewing medical journal articles and reading reports from seven physicians who had been involved with my diagnosis and treatment, I reached an accord with my radiation and chemo oncologists: The right neck would be radiated along with both tonsils and the base of my tongue.

We would skip the left neck and the nasal passages behind my palate, called the nasopharynx. That wasn’t an easy decision. Randy had sent me an e-mail seven days earlier telling me I had the data I needed.

“I cannot make the final choice for you,” Randy wrote. “You have all the information and opinions a person could wish for and it is time to make a decision.”

But I felt like a mechanically inept car buyer. My choice between the Toyota and Honda was likely to be based on which salesman got to me last. In this case, Swift and his fellow radiation oncologists at UCSF and the Dana-Farber Cancer Institute in Boston were advocating for the maximum field of radiation to ensure the cancer didn’t return. My wife, a pathologist, was lobbying for me to reduce side effects by minimizing the field — and trust that the powerful new chemotherapy treatment I’d received had covered the rest. Randy, the doctor who oversaw that chemo, had agreed with my wife, but his signals had been more subtle.

The more I read the studies and reports, the more conflicted I felt. As Swift had written in his report, “there are several difficult questions to answer in this particular case.” If they were tough for the doctors, they were even harder for me.

I wrote a five-page memo to Swift and Randy outlining my concerns and confusion. Randy responded the next day. On the issue of whether to treat just one side of my neck, he said, “The National Comprehensive Cancer Network now adds the option of unilateral neck radiation for an unknown primary. That would be reasonable for you.” As for the nasopharynx, he said he didn’t think that was the location of the source of my cancer, and he encouraged me to “dismiss the issue.” He thought my cancer probably originated on my tonsils.

Swift, who had received a copy of Randy’s e-mail, responded minutes later by agreeing to Randy’s recommendation. At last, I had a consensus, or the closest I could hope to get to one.

But then I saw Swift that afternoon for my appointment. If the cancer were to recur in the left neck, he assured me, it could be treated with surgery, radiation and additional chemotherapy. The nasopharynx was different. It would be very difficult to use radiation if cancer were later found there because nearby areas would have already received treatment.

If there’s a cancer recurrence in those nasal passages, Swift warned, “the ballgame is up.”