Newsletter #48–Jun./Jul. 1998
From the Executive Director: My Sister's Keeper
by Barbara A. Brenner
Like most women with breast cancer, I often receive calls from friends and acquaintances of friends who have just been diagnosed with the disease. I recently received one of those calls from someone I had hoped would never need such help—my younger sister, Nanci. As I write this column, three weeks after Nanci's mastectomy, she's doing as well as can be expected, healing physically and struggling to adjust to having been drafted into the army of one-breasted women. Nanci's experience is instructive on so many levels that I've asked her if I could describe it in this column.
The first hint of a problem came as the result of a routine mammogram. Nanci, who is now 43 years old, has been having annual mammograms since my diagnosis at age 41 in 1993. Following this year's x-ray, Nanci got a call from the radiology center asking her to come back for more pictures. How many of us have been in this place? But, since I knew there was a good chance of a false positive (most recently highlighted in a New England Journal of Medicine report, see "Study Finds High Rate of Mammogram False Alarms," The San Francisco Chronicle, 4/16/98), especially for someone so young, I was reassuring.
When Nanci went in for her follow-up, she had an ultrasound exam. The technician showed her clusters of microcalcifications and explained that these clusters had prompted the callback. When Nanci met later with the radiologist, he suggested that she wait six months and then have another mammogram. While he did not explain to her what he was concerned about, he did say that he would consult with his chief of staff about the appropriateness of his recommendation.
Maybe because we were brought up in the same household, Nanci refused to take the "wait and see" advice. When we talked, she expressed great discomfort with the radiologist's approach and said that she thought she should see a breast surgeon. By the time Nanci finally received the written report from the radiologist so she could see the surgeon, she was pretty stressed out. Her surgeon examined the mammogram and ultrasound results, took some of his own mammograms and told Nanci that the clusters of microcalcifications—three in all—needed to come out. This was the only way to tell for sure whether she was facing breast cancer. Core biopsies were not an option because of the number of sites. Excisional biopsies were needed.
Because the lesions in her right breast could not be felt, wire localizations were necessary to assure that the correct tissue was biopsied. After enduring the excruciating process of having three wires placed in her breast, Nanci underwent the biopsy surgery. Two days later, Nanci received a call from the doctor's office, asking her to come in at 9 o'clock that night. She knew the news would not be good.
Nanci called me after she returned from her doctor's office, with notes about her conversation with the surgeon. The biopsies had revealed DCIS (ductal carcinoma in situ) in two places in her breast. There were no clear margins. The nuclear grade was II/III. (Tumors are graded from one to three or four, with higher numbers indicating a more aggressive disease.) The doctor believed that Nanci needed a mastectomy. She was upset and terrified, but knew what she needed to do.
We talked at length about what DCIS is, about mastectomy surgery and about immediate reconstructive surgery, which her surgeon was suggesting, but which Nanci was not inclined to do. I encouraged her to seek a second opinion, but Nanci trusted her surgeon and felt strongly that his mastectomy recommendation was right for her.
We spoke every day by phone as Nanci came to grips with what she was facing. She visited a store that specializes in breast prostheses and resolved not to have reconstruction. She called on her terrific husband and wonderful friends to be with her at critical times. She was sad and strong. And she was a nervous wreck, unable to get more than a few hours of sleep at a time.
Nanci decided to have her mastectomy as an out-patient (she hates hospitals), and I went east to be with her. I watched her family and friends rally around to take care of her. I was once again impressed by who my sister Nanci is, how she has built her community and how the difficult choices around a breast cancer diagnosis must ultimately be made alone.
I was unhappily impressed by a couple of other things. Nanci lives in a major metropolitan center in Baltimore. She received her mammogram and the "wait and see" advice at one of the leading medical complexes in the region. Why, in 1998, was it necessary for my sister to write to the radiologist to alert him to the dangers to which his advice exposed her and to call upon him to change the way he treats women?
And while I waited to hear from Nanci about her post-biopsy visit to the surgeon, the National Cancer Institute and the American Cancer Society were proudly announcing the latest figures on incidence and mortality. But those figures do not include DCIS. When you read all the fine print in the reports, you find that the expected 36,900 cases of DCIS are in addition to the estimated 180,300 new cases of breast cancer this year in the United States.
But Nanci's experience is the experience of breast cancer. She has faced the terror of diagnosis and is coping with the effects of treatment. So why are these cases excluded from the statistics? Is it because DCIS is not life-threatening? Or is it because, when added to the cases of invasive breast cancer, the DCIS numbers put us frighteningly above 200,000 cases of breast cancer a year? As the invasive cancer numbers go down, the DCIS numbers go up. When screening mammograms reduce mortality, they do so largely by finding breast cancer before it becomes invasive. But, taking the invasive and the in situ cases together, the number of breast cancer cases increased by 1,500 from 1996 to 1998. Behind each of these numbers is a story like Nanci's.
Clearly, we have much work to do. I am so sorry that my sister has been dragged into the world of breast cancer, but I am thrilled that her prognosis is excellent and happy to have her join activists working to save future generations from the cancer epidemic.