You can understand why TV writers love rare diseases. They sound exotic and scary, and if the script gets it wrong, not that many people will know.
I wrote about this in 2010 in regard to an episode of “Grey’s Anatomy” involving a ballet dancer. Last month, “Grey’s Anatomy” and its spin-off, “Private Practice,” had crossover episodes featuring a woman with gliosarcoma. I asked Ralph Lehman, a Tampa neurosurgeon, to watch "Private Practice."
"Gliosarcoma ... is a rare variant of glioblastoma and, as best I know, they do not survive more than a year after surgery and most far less," he said. “The doctors talked to the patient as if she would be cured. You wouldn’t want to give that impression.”
Other aspects struck him as curious: "I don’t think anyone puts stents into brain arteries to do their tumor surgery. Sometimes one might (very unusual) put a catheter up into the neck vessels or even up into a vessel in the head itself but this is introduced from below and is therefore pulled out from below, not through the craniotomy defect (i.e., from the surgical field itself).
"The tumor was on the right side of the head and someone mentioned possible speech defects as a hazard of surgery. Unlikely unless the patient was left-handed. The postop recovery seems a bit rapid and the dressing a bit scant, but it is TV."
Here are some more thoughts about sarcoma on TV:
Understand that surgery may not be a cure-all. When a surgeon says he got all the cancer, a lot of patients think they’re cured, and sometimes they are. But doctors need to know how to deliver bad news, just as they need to know how to give hope. They need to take the time to explain your disease to you, and they need to plan for follow-up care.
You need a specialist, at least for a second opinion. The Sarcoma Alliance recommends multidisciplinary sarcoma centers and children’s hospitals with experts in sarcoma pathology, radiology, medicine, surgery, social work, etc.
“You don’t want the person running the CT scanner doing your neurosurgery,” joked Executive Director Arthur Beckert of Mill Valley, Calif.
“On TV, the same doctors see you in the ER, the OR, the ICU and the floor,” said board member Marites Tullius, laughing. She’s a nurse practitioner in a Los Angeles County hospital. “They know everything about everything.”
Last year, "Grey's Anatomy" featured a young ballet dancer with osteosarcoma. His chemo didn't work, and it appeared as if his only option was amputation. He and his parents argued that dance was his life, and he couldn't live without it. He insisted the doctors watch him perform, and they were so moved that they did more research and came up with a way that he could keep his leg.
Don’t dance around – see a specialist who already knows the latest techniques.
Oncologists generally don’t treat both adults and children. For example, the ballet dancer was treated at Seattle Grace, not by an oncologist in a children’s hospital.
“It has always bothered me that regular TV doctors treat pediatric cancer patients. They did on ‘ER,’ ” said board President Joan Darling, a biologist in Lincoln, Neb., who watched the show with her daughter when the teen was being treated for rhabdomyosarcoma.
The same thing happened last year on “House,” when a teenager was diagnosed with a “lymphoid sarcoma” of the humerus. The doctors decided on amputation, but the girl refused because she hoped to set a record as the youngest person to sail solo around the world. A medical student gave the girl a medication to cause a cardiac incident, and when she was unconscious, her parents signed a consent form for the amputation.
Seek a second opinion. The Alliance has an assistance fund to help reimburse people who seek a second opinion from a sarcoma specialist. That’s what the girl with "lymphoid sarcoma" needed.
Alliance board member Gina D’Amato, a medical oncologist in Atlanta, wondered if the scriptwriters meant lymphosarcoma, which would be treated with chemo like a lymphoma, not with amputation. Or, was it a subtype of soft-tissue sarcoma that arose in a lymph node and spread to the bone, or a bone sarcoma that spread to a lymph node? In any case, she said, the parents would want to consult with someone experienced in sarcoma.
You have the right to informed consent. No one should force or trick you into treatment. Doctors should fully explain procedures, risks and side effects. Sarcoma centers also should have social workers who can help patients make medical decisions.
Test results often take time. In “House,’’ the girl’s pathology results came back within a day. In “Private Practice,” Dr. Lehman wondered how the surgeons were sure the woman had gliosarcoma before pathologists examined a tissue sample.
I've waited a couple of weeks for results. Also, sarcoma often is misdiagnosed at first. Mine was. You need a pathologist experienced in sarcoma to confirm the diagnosis.