Susan Mitchell Thomas, 11-year breast cancer survivor
"My doctors gave some verbal recaps, but without a written treatment summary or a survivorship care plan, you forget things."
Susan Mitchell Thomas really learned about life with cancer when her husband was diagnosed with metastatic melanoma in 1995. He died a year later, but the skills she learned while he was in treatment became life-savers two years later, when she was diagnosed with breast cancer.
Susan had a lumpectomy and then a modified radical mastectomy, followed by chemotherapy and five years of Tamoxifen. She did not receive a written treatment summary or a survivorship care plan. Her doctors gave her some verbal recaps, but, she says, “You forget things.”
Instead, the retired science teacher created her own summary sheet, which helps her accurately fill in questionnaires when she visits a new doctor. It lists her three main doctors: internist, oncologist, and surgeon with their contact information. It lists all of her current medications, her family history, her allergies, the surgeries that she has had, and her contact information. On the back it has the names and contact information of the dozen doctors that she sees.It’s a lot to keep track of. “I’ve had CAT scans, PET scans, every kind of scan there is. I have regular colonoscopies and blood tests, which still show I have a cancer factor in my blood stream. I now have 12 healthcare specialists seeing to my treatment,” she says.
Susan also asks every doctor and clinician that she sees to send copies of their reports to her oncologist and her internist. Some—such as the center where she gets her mammogram—won’t send it to both, so she has to follow up herself and ensure that each office has a copy.
Cancer treatment has had a significant impact on Thomas’s health, so it has become vitally important to keep track of her treatments and the late-term effects she might experience, as a result. For example, she recently had surgery on her left foot for bone growths. During the procedure her podiatrist said her metatarsal bone looked as if a carpenter bee had drilled into it. And that the bone is deteriorating from the inside out. “It’s like mush inside,” she says. “We’re not certain, but we suspect this is an effect of the chemotherapy.”
But, she says, knowing about side effects—such as “chemo brain”—and late-term effects, such as second cancers, in advance would have been much more helpful in understanding and managing her symptoms, and making decisions about her treatment.
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Submitted by: Keith Houston
January 6, 2010