Thursday, March 4, 2010

Breast Cancer Patients' Bill of Rights

I feel like I'm back at square one with my mother's breast cancer diagnosis. So, remembering how overwhelming hearing the words, "You have breast cancer" was for me, I wanted to make sure that my mother knows what she has the right to expect. As a breast cancer patient she has a right to:
  • A diagnosis within a week of a suspicious mammogram and biopsy. A quick diagnosis will help to allay anxiety.
  • A prompt referral (within three days) by her family doctor to a breast specialist or team specializing in breast cancer.
  • A breast specialist with whom she feels comfortable. She may feel that she doesn't have time to find a good caregiver, but most breast cancers are slow-growing. She should ask her family doctor if there is anything about her diagnosis that would prevent her from taking the time to find a good specialist.
  • A specific diagnosis. She now knows she has breast cancer, but she needs to know its attributes. Is it estrogen dependent? How many lymph nodes are involved? What stage is the cancer? The answers to these questions will dictate her treatment.
  • A second opinion. Mistakes can be made, so she'll want to confirm the details of her diagnosis. Her biopsy slides should be sent to a pathologist (preferably one who specializes in analyzing breast tissue) at a different institution. In addition, she may want a second opinion when it comes to deciding on her treatment.
  • A copy of her medical records, including the pathology report. She'll need them to obtain a second opinion and for your her files. Most states allow consumers access to their records, but may charge a small fee.
  • Information about her condition and treatment options in language she can understand. If the doctor is having trouble communicating in layman's terms, he/she should recommend books or Web sites that might offer clearer explanations.
  • Know the scientific evidence behind the doctor's treatment recommendation, and the strength of that evidence. Doctors are often influenced by their peers in the way they treat diseases. For instance, studies have shown that women are more likely to get a mastectomy if they live in the Midwest. Scientific evidence shows that a lumpectomy with radiation is often equally beneficial.
  • Information about the benefits and risks of a particular treatment in her case-including the benefits and risks of not having the treatment.
  • Information about clinical trials. Some doctors don't recommend clinical trials to their patients because they don't want to admit that they don't know something about breast cancer. Plus, some doctors don't want to lose a patient to a clinical trial for financial reasons. So she should ask your physician if he/she knows of any studies she might be eligible for, and check the list of trials at the National In-stitutes of Health Web site: www. clinicaltrials.gov.
  • A referral to another breast specialist if she's having trouble communicating with her doctor. If she's not happy with her doctor's referral, she should ask other breast-cancer patients in her community about their physicians.

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