This common therapy is very advanced...and very dangerous

The way around harm’s way

Today I’m going to do my small part to help grant a decent man his dying wish — that you and I might avoid his fate.

In 2001, Scott Jerome-Parks started a new job as a computer and systems analyst. But just days after his first week on the job, his workplace vanished when the twin towers of the World Trade Center collapsed.

Scott reacted with generosity. He gave blood. He volunteered with the Red Cross. He even helped drive rescue workers to and from the WTC site.

About four years later, Scott was diagnosed with a cancerous tumor at the base of his tongue. Because he was only 40 and had never smoked, his doctor believed the tumor might be linked to toxic dust exposure in the days after 9/11.

By early 2007 Scott could no longer swallow and could barely breathe. He’d become deaf, nearly blind, and experienced constant pain and nausea. But by this point, any question about the link to 9/11 was irrelevant because his cancer didn’t cause these conditions. They were caused by his treatment.

Smart is as smart does

Given the choice between radiation therapy or a combination of surgery and chemotherapy, Scott decided on treatment with a new technology known as linear accelerator — a major advancement in very specific targeting of tumors using powerful doses of “smart beam” radiation.

The drawback: This technique is complex and prone to error when not handled with the greatest of care.

A friend of Scott’s told the New York Times that after the first radiation session she found him writhing in pain, his head and neck grotesquely swollen.

After two more sessions, a medical physicist rechecked Scott’s treatment plan and discovered that instead of focusing a very precise beam on his tumor, the linear accelerator had actually delivered a wide beam of radiation to Scott’s entire neck area.

The final treatment was canceled and the radiation oncologist delivered the devastating news to Scott and his wife. A computer error that went unnoticed by the medical physicist caused an overwhelming radiation overdose that would probably be fatal.

Up to you

“We were just stunned that a company could make technology that could administer that amount of radiation — that extreme amount of radiation — without some fail-safe mechanism.”

That’s a friend of Scott’s, speaking to the Times, and asking the questions anyone would reasonably ask: “How could this happen? What accountability do these companies have to create something safe?”

After Scott’s accident, the company that produced the linear accelerator issued new software with a fail-safe feature. Too late for Scott, but at that point it was exactly the action he hoped to see. He told family and friends that he wanted his experience to be talked about and studied so it might not be repeated in other patients.

But as the Times notes, hospitals aren’t exactly eager to share information about hideous radiation mistakes. Most doctors involved with radiation don’t want to discuss errors. And in New York State, the law actually withholds information about hospitals that report mistakes in order to encourage better reporting.

So who will protect you from radiation mistakes?

You.

If you or someone you love is a radiation candidate, talk to your oncologist about the procedure. Be specific. Do some research, and then ask more questions. Create your own support group with friends or family members who can help research and brainstorm detailed questions. You can also check with the hospital where the procedure will take place to see if they have a patient advocate who might be willing to discuss radiation accidents and risks.

Radiation is a harsh treatment, even when no errors occur. But one radiation oncologist told the Times that errors are made in as many as one in 20 procedures. Most of those errors don’t produce nightmarish results like Scott’s. But one in 20 odds are not very encouraging.

Scott passed away four years ago. It was his one wish that all of us might know the risks of radiation therapy and avoid his fate. So I hope you’ll share this warning with others you care about — especially those who may be weighing tough choices in cancer treatments.

Sources:
“Radiation Offers New Cures, and Ways to Do Harm” Walt Bogdanich, New York Times, 1/24/10, nytimes.com