When I first wrote about my sister’s health problems earlier this year, a Cedars-Sinai doctor I know called to ask if he could help in any way. Actually, I said, I’d appreciate a referral to a good oncologist.
What’s happened since then is a cautionary tale for anyone who gets sick.
My sister Debbie, 57, was diagnosed with ovarian cancer about 2 1/2 years ago. She lives in Northern California, where we both were raised, and she got excellent care from her managed-care provider. I’m withholding the name of the provider because when I spoke with doctors there, it was as a concerned brother rather than a journalist.
A large tumor was surgically removed from my sister’s abdomen. Then she underwent grueling bouts of chemotherapy and radiation, and began her recovery. Just when she was feeling herself again, she got more terrible news.
In June, an MRI revealed a brain tumor the size of a golf ball.
The doctors said it was possible the tumor was benign, unconnected to her previous cancer. Surgical removal showed otherwise. My sister’s growth was a carcinoma. Her ovarian cancer had metastasized.
When Debbie was well enough to visit her oncologist, he strongly recommended she undergo whole-brain radiation over other treatments, so she resigned herself to the procedure. Meanwhile, I began doing a little research.
The median survival rate for someone who has surgery followed by whole-brain radiation, according to one often-quoted study, is 23 months. I also learned there can be significant side effects from whole-brain radiation, including memory, hearing and vision loss. I found the news so grim, I withheld it from my sister until she’d regained some strength. She had said, by the way, that her doctor had led her to believe that side effects from whole-brain radiation are often minimal and don’t show up for years.
In the meantime, I called the doctor recommended by my friend at Cedars. When she heard the details of my sister’s case, the doctor, one of the nation’s leading specialists in women’s cancers, strongly recommended that we get a second opinion — because from what I was describing, whole-brain radiation might not be necessary.
She also disagreed on another point, saying side effects from the procedure were not uncommon, often immediate and potentially severe. In similar cases, she recommended gamma-knife radiation for her patients, a more localized treatment that doesn’t kill anywhere near as many healthy cells.
If the cancer returned, as it often does, that would be the time for whole-brain radiation, she said.
I called my sister with the news and she decided to hold off on a decision. Meanwhile, I spoke to two more prominent oncologists who backed the doctor from Cedars-Sinai, one of them emphatically. He said the approach recommended to my sister was old-school medicine.
My sister’s oncologist disagreed. If she wanted the gamma knife, he told me, he’d support it. But it would require an out-of-network referral, because his hospital didn’t have the equipment.
"If she were my sister, I’d recommend whole-brain radiation," he said, insisting that the procedure was the best way to ward off any recurrence for the longest period of time.
He’s a doctor; I’m not.
Should I stay out of it?
Not a chance.
I called the experts I’d spoken to earlier with more specific information about the cell structure of my sister’s surgically removed tumor. Based on what I was telling them, they stuck with the gamma knife recommendation, and my sister’s own research had led to the same conclusion.
So what was going on? Was the managed-care doctor’s recommendation based on good medicine and familiar protocol, or on the company’s aversion to out-of-network expenses?
I got the names of specialists at the UC San Francisco Medical Center, and my sister’s oncologist agreed to send her there for a second opinion. The referral process was maddening, and my sister found battling the bureaucracy almost as tough as trying to recover from brain surgery.
In the end, a team of UCSF doctors barely considered whole-brain radiation.
Gamma knife surgery.
I began wondering about all the people who might have undergone whole-brain radiation, and had their quality of life diminished, because they weren’t told enough about other options. And how many thousands of times does that happen with other illnesses?
My sister had the advantage of a hell-raising brother who’s accustomed to rattling cages and demanding answers. And I was lucky enough to know a doctor who gave me entree. But Jamie Court of Consumer Watchdog advises all patients to ask tough questions of their doctors.
"If the best treatment isn’t in the HMO network," he said, "the patient may never hear about it. Even if it’s the most likely way to save their life."
To learn more about your right to a second medical opinion, Court suggested visiting www.calpatientguide.org.
Mike Bidart, a Claremont lawyer, has represented several clients who were denied gamma knife treatment. He said he’s won out-of-court settlements in each case, but only after tough fights.
There’s no doubt that cost is a consideration in medicine, said Art Caplan, a medical ethicist at the University of Pennsylvania. And it should be, of course. We can’t all expect to get referrals for every treatment available, while at the same time screaming about the high cost of healthcare. But Caplan added that it’s a doctor’s duty to lay out in detail all the known options for a patient with a deadly disease.
My sister underwent gamma knife surgery three weeks ago at UCSF and is doing well, volunteering in her spare time to raise money for cancer research. Her managed-care provider has said it will pick up at least part of the bill this time, but perhaps not if she needs surgery again.
She knows, as we all do, that the cancer may return. But she’s strong and willing to keep fighting, whether the foe is cancer, an HMO or both.
Contact the author at: [email protected]