The national nonprofit organization discusses the incorrect information on medical shows and makes suggestions, just in time for Rare Disease Day.
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A rare cancer like sarcoma sounds scary on television, and if the script gets it wrong, not that many people will know, Sarcoma Alliance board member Suzie Siegel said Wednesday, on Rare Disease Day.
“I can understand why TV writers love rare diseases,” said Siegel, a survivor of leiomyosarcoma who lives in Tampa.
The topic arose this month when “Grey’s Anatomy” and its spin-off, “Private Practice,” had crossover episodes featuring a woman with gliosarcoma. In a telephone conference, Sarcoma Alliance board members had advice for patients with rare diseases who watch TV:
— Understand that surgery may not be a cure-all. At the request of the Alliance, Ralph Lehman, a Tampa neurosurgeon, watched “Private Practice.” Among its mistakes, he said, “the doctors talked to the patient as if she would be cured. You wouldn’t want to give that impression” because most people with the rare brain cancer die within a year. Gliosarcoma is treated like the more common glioblastoma, he said, not like a true sarcoma.
There are more than 50 subtypes of sarcoma, a cancer of connective tissue, including muscle, bone, fat, nerves, cartilage and blood vessels. Sarcoma represents 1 percent of cancers in adults, and 15 percent of those in children. Siegel said some sarcomas will never return after surgery, but others will spread, as hers did.
“When a surgeon says he got all the cancer, a lot of patients think they’re cured, and sometimes they are,” she said. “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 if you have a rare disease. 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., where the Alliance is based.
“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,” Beckert said.
— 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,” she said, 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 on ‘House’ needed,” said Alliance board member Gina D’Amato, a medical oncologist in Atlanta. She 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 then 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, Beckert said. He said 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,” Siegel said. “Plus, sarcoma often is misdiagnosed at first. Mine was. You need a pathologist experienced in sarcoma to confirm the diagnosis.”
The national nonprofit Sarcoma Alliance offers a peer-to-peer network, live chat room, Facebook page, YouTubechannel, blog and discussion board so that people can support one another and share information. For more information, visit http://www.sarcomaalliance.org.