Living Through Breast Cancer: What a Harvard Doctor and Survivor Wants You to Know about Getting the Best Care While Preserving Your Self-Image

At 42, Carolyn Kaelin, M.D., M.P.H., was a wife, a mother, a highly respected breast cancer surgeon, and the director of the Comprehensive Breast Health Center at Brigham & Women's Hospital, a major teaching hospital at Harvard Medical School. In July of 2003, she was training for the Pan-Mass Challenge (PMC), a 190-mile bike ride across Massachusetts that raises funds for cancer research at Dana-Farber Cancer Institute. While removing her cycling jersey following a short training ride on a hot summer Sunday less than 2 weeks before the PMC, Dr. Kaelin took the first step toward becoming a breast cancer survivor -- she noticed a very tiny change in the skin of her breast, a change that doctors call skin retraction. This subtle dimpling indicated that cancerous cells lay beneath and were tugging on one of the supporting ligaments that bridge the skin and chest wall. Within days, Dr. Kaelin had a diagnosis in hand and over the next year and a half she had undergone numerous surgeries to remove the cancer and reconstruct her breast as well as months of chemotherapy. Despite all of this, she rode in the Pan-Mass Challenge that year and has done so in subsequent years, too. Herewith, her thoughts on five ways in which her story stands as a well-timed reminder that breast cancer awareness serves all of us well, whether or not we develop breast cancer.

Be aware of the importance of regular screening.
In line with American Cancer Society guidelines, I recommend clinical breast exams roughly every three years for women in their 20s and 30s. Starting at age 40-or younger if your physician determines you're at high risk for breast cancer -- schedule yearly mammograms and clinical breast exams. I believe monthly breast-self exams have a place in screening for all women. Unless there is a family history of breast cancer, women under 40 do not have annual mammograms. Thus, a self-exam may find a cancer that would otherwise go undetected. Some of the women I've cared for noticed a suspicious change in their breasts that appeared between mammograms. Ask your health care provider to show you how to examine your breasts or contact the American Cancer Society (1-800-ACS-2345 or www.cancer.org) for information.

Be aware of the signs of breast cancer.
Relax. Most of the changes women notice when checking their breasts do not turn out to be cancer. Yet getting worrisome changes checked quickly is important. In my case, I noticed a suspicious change on the skin of my breast on a Sunday and had diagnostic tests done the very next day. That meant I could receive excellent care as quickly as possible. Possible signs of breast cancer commonly include a lump or thickening. Less common are a dimpled spot where skin pulls in, a persistent reddened spot or region on the skin, or changes in the nipple, such as a newly inverted nipple, scaliness, or discharge.

Be aware of newer options for diagnosing breast cancer.
Breast cancer is never diagnosed solely through imaging tests, such as mammography and ultrasound. One or more biopsy techniques must also be performed. A core needle biopsy removes a small sample of breast tissue through a hollow needle. The cells are examined under a microscope for signs of cancer by a specially trained doctor called a pathologist. Since the early 1990s, core needle biopsy guided by ultrasound or mammography has become the premier way to evaluate breast abnormalities seen through imaging studies, even if they can not be easily felt by hand. Core needle biopsy preserves the option, when appropriate, of choosing chemotherapy before surgery to shrink a tumor enough to allow a lumpectomy instead of a mastectomy, if a woman wishes. Just as importantly, 75-85% of abnormalities found through imaging tests prove to be benign, so a core needle biopsy spares a woman unnecessary surgery plus the resulting scar and possible change in breast shape.

Be aware of the difference a strong cancer care team can make from the earliest days of diagnosis.
Gathering second opinions, including opinions on pathology (that is, the microscopic examination of breast cancer cells and tissue) and breast imaging studies, is a good idea. Have pathology slides reviewed by a specialist in breast pathology at the hospital where you're being treated or have them sent elsewhere for evaluation. Subtle or not so subtle interpretations by an experienced eye may affect treatment. Is another surgery needed? Will chemotherapy be helpful? Likewise, find a radiologist who specializes in breast imaging to look at the imaging studies. Occasionally, everyone focuses on an obvious cancer and overlooks a tiny cancer elsewhere in that breast or on the other breast. Choose your other cancer care team members knowing that this is a long-term relationship -- you might return to see them in the future. Meet with several doctors, if possible, and try to choose people you can trust and talk to and who listen. They should keep up with ever-changing breast cancer literature and take time to discuss how gold standard research and new studies apply to you.

Be aware of clinical trials.
New treatments are routinely tested in clinical trials during which patients receive standard therapy considered most effective or a therapy being tested to see if it offers advantages, such as improved survival or fewer side effects. Talk to your cancer care team about whether there are any appropriate trials that you might consider joining and discuss possible advantages and drawbacks. You also can check www.clinicaltrials.gov (888-346-3656) for national information on current clinical trials.