Patient education

          People with rare cancers, such as sarcoma, may have different needs when it comes to patient relations and education.

         A person diagnosed with a common cancer has a much better chance of knowing someone who survived that kind of cancer. But people with sarcomas may end up comparing their cancer to someone with a different cancer, and that can lead to all sorts of misunderstandings.
        For example, carcinomas usually are identified by the site where they originate, such as “breast cancer” or “thyroid cancer.” This differs from sarcoma, which often is named for the cell it most resembles. This can cause confusion, not just for the patient, but also for health-care workers who aren’t familiar with sarcoma. A woman with angiosarcoma in her breast may understand only that she has cancer in her breast, and a patient educator may give her material on “breast cancer.”

        The confusion is compounded by the fact that there are at least 50 different subtypes of sarcoma, which often behave differently and are treated differently.
        Let’s say Jane goes to the local hospital, where a gynecologist discovers her “fibroid” is uterine leiomyosarcoma (ULMS). She talks to a friend who had radiation and chemo for breast cancer, and Jane begins to wonder why her doctor didn’t offer those options to her.

        She decides to get a second opinion from a comprehensive cancer center. When she calls to make an appointment, she tells the scheduler that she had cancer in her uterus. She is referred to gynecologic oncology.
         Jane reads about uterine cancer (carcinoma) on the Internet, and some things don’t make sense to her. At the patient education center at the cancer center, she gets more information on uterine cancer (carcinoma). In the gyn clinic, there are no brochures on sarcoma.
         Finally, she understands that she has sarcoma. She discovers the Sarcoma Alliance, and she learns that her cancer center has a sarcoma department. Although she likes the gyn oncologist she sees, she’s outraged that she didn’t have the option of seeing someone in sarcoma. She complains to patient relations. She learns that she always had the option of seeing doctors in both gyn and sarcoma -- she just didn’t know it.
          If health-care workers are attuned to the existence of rare cancers, they can head off confusion and anger in patients. 

          -- Suzie Siegel, board member