NEW YORKTwo breast cancer survivorsone an oncologist from Albert Einstein College of Medicine, the other, the head of the National Alliance of Breast Cancer Organizations (NABCO)were among those offering special perspectives at a public meeting on clinical and public policy issues related to breast cancer, sponsored by NABCO and held at Memorial Sloan-Kettering Cancer Center.
You roll with the punches. Somehow you survive, Carolyn Runowicz, MD, director of the Division of Gynecologic Oncology at Albert Einstein and Montefiore Medical Center, New York, told the group. (Dr. Runowicz has also written a book on the subject, To Be Alive: A Womans Guide to a Full Life After Cancer, published by Henry Holt & Co.)
Breast cancer is not a minor inconvenience, she said. You may not die from it, and you probably wont if you catch it early. But it certainly forever changes your life. I think its important that we verbalize the issues for breast cancer survivors, including those involving quality of life.
Dr. Runowicz said that she was 41 when her breast cancer was diagnosed. I had to face my own mortality, which I wasnt planning on at age 41. As a matter of fact, I thought, being committed to oncology, that somehow I was protected, and I would die of something else at age 60 or 70 or in my 80s. I wasnt, at 41, prepared to face that issue.
The Patient Didnt Hear
Her cancer was detected through self-exam and diagnosed by fine-needle aspiration, which she had insisted on having performed after mammography was negative. The tumor was small, and after surgery, while she was lying in her hospital bed, her doctor came in and told her she had lymphovascular invasion.
Then he told me I had positive lymph nodes. But I didnt hear it, she said. I mean, here I am, a professional, and I didnt hear a word that was being said to me. It took phone calls to two more doctors for her to digest that she had positive lymph nodes. So I went from Im not taking chemotherapy to how much chemotherapy am I taking?
Dr. Runowicz reiterated her advice to patients to roll with the punches, adding the good news that there are many survivors to roll with you, so many that the National Cancer Institute and the National Institutes of Health have recognized this development and established an Office of Cancer Survivorship.
[The NCI has also recently developed a training program for health care professionals on issues important to cancer survivors.]
Dealing With the Diagnosis
Later on at the NABCO meeting, a 35-year-old woman in the audience who had a 1.2 cm lump removed from her breast just 4 days earlier stepped up to the microphone. She had been doing research for days, she told the speakers, and she peppered them with questions regarding future treatment options. NABCO executive director Amy Langer, a breast cancer survivor, gave her some advice.
The first thing that I would say to you is to slow down, she said. Try to break it up into steps. There are a number of critical decisions that have to be made immediately, but most do not.
First and foremost, she advised women with a new diagnosis of breast cancer to be certain that they are with a medical team they like and trust.
Validate things with a second opinion. You can also get in touch with a major cancer information organization that can give you the kind of background materials that can help you orient yourself in what is a tremendously disorienting time in your life, she said.
Since the womans lump had been removed, she said, it may well be that most or all the cancer in your body is gone, so if you think that way, it becomes a little bit less of an emergency.
Ms. Langer noted that women who perceive a diagnosis of breast cancer as an emergency may make quick decisions that, in retrospect, were perhaps not the best decisions for them. I would suggest that you take a deep breath and separate the systemic therapy decisions from what you are thinking about surgery, she advised the audience.
In many cases, she told the woman, a mastectomy is not necessary for a 1.2 cm tumor. Its something to talk about with an expert team that will walk you through the reasons for a mastectomyand there are someand how local control relates to future cancer risk, she said. Its a long road. Theres a lot of help out there, and a lot of people who will be getting help along with you.
Democratic Congresswoman Nita Lowey of New York talked about possible legislative help. Ms. Lowey, who serves on the House Appropriations Committee, has sponsored a number of bills to increase funds for medical research and prevention.
We all have in common that we know someone who has breast cancer, said Ms. Lowey, whose mother had the disease. What I continuously ask is why arent we moving more quickly? Why are we still using the same type of mammography machines if so many of the tumors are found only through physical examinations? Why arent we using MRI? Why arent we using digital mammography? I join you in a great impatience.
Recently, Ms. Lowey offered a bill authorizing $590 million for breast cancer research at the National Cancer Institute in fiscal year 1998, a 40% increase over current funding. In 1991, she said, the NIH was spending less than $100 million on breast cancer research.
She has also introduced legislation that prohibits discrimination in employment on the basis of genetic information, and is a cosponsor of a bill prohibiting similar discrimination by insurers.
Ms. Lowey said that Congress also needs to act on pending legislation providing a minimum standard of care for women undergoing mastectomies and requiring insurance companies covering mastectomies to provide coverage for reconstructive breast surgery as well.
There are lots of ways to talk to Congress about breast cancer, Amy Langer told the group. You can scream and demand, or you can educate. Weve been educating Congress. And with that education, she noted, federal funding for breast cancer research has increased.