Breast Cancer Patients' Bill of Rights
You may feel vulnerable, but you must stand up for yourself to get the best medical care. Here are some tips from Sara Collina, senior policy analyst at the National Breast Cancer Coalition, a patient-advocacy group in Washington, D.C., and Susan Love, M.D., an adjunct professor at the University of California at Los Angeles and author of Dr. Susan Love's Breast Book (Perseus Publishing, 2000).You have a right to:
- A diagnosis within a week of a suspicious mammogram and biopsy. You'll want a quick diagnosis to allay your anxiety.
- A prompt referral (within three days) by your family doctor to a breast specialist or team specializing in breast cancer.
- A breast specialist with whom you feel comfortable. You may feel that you don't have time to find a good caregiver, but most breast cancers are slow-growing, says Love. Ask your family doctor if there is anything about your diagnosis that would prevent you from taking the time to find a good specialist.
- A specific diagnosis. You know you have breast cancer, but you need 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 your treatment.
- A second opinion. Mistakes can be made, so you'll want to confirm the details of your diagnosis. Be sure to have your biopsy slides sent to a pathologist (preferably one who specializes in analyzing breast tissue) at a different institution. In addition, you'll probably want a second opinion when it comes to deciding on your treatment.
- A copy of your medical records, including your pathology report. You'll need them to obtain a second opinion and for your own files. Most states allow consumers access to their records, but you may be charged a small fee.
- Information about your condition and treatment options in language you understand. If your doctor is having trouble communicating in layman's terms, ask her to recommend books or Web sites that might offer clearer explanations.
- Know the scientific evidence behind your 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 you're more likely to get a mastectomy if you live in the Midwest, says Collina. Yet scientific evidence shows that a lumpectomy with radiation is often equally beneficial.
- Information about the benefits and risks of a particular treatment in your 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, says Collina. Plus, some doctors don't want to lose a patient to a clinical trial for financial reasons. So ask your physician if she knows of any studies you 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 you're having trouble communicating with your doctor. If you're not happy with your family doctor's referral, ask other breast-cancer patients in your community about their physicians.
Castle Connolly, the medical publisher that researched and compiled this list of top doctors in women's health, also publishes an annual directory of leading specialists in 61 specialties and sub-specialties. To order a copy, visit the Web site www.AmericasTopDoctors.com or call toll-free, 800-399-3627.
Originally published in Ladies' Home Journal magazine, 2002.
The information on this Web site is designed for educational purposes only. It is not intended to be a substitute for informed medical advice or care. You should not use this information to diagnose or treat any health problems or illnesses without consulting your family doctor. Please consult a doctor with any questions or concerns you might have regarding your or your loved one's condition.