Courtesy Gail Zeamer“I’ve been telling my story for over a year. Sometimes I tell it with strength. Other times, I cry,” says Wisconsin native, Gail Zeamer. A health junkie in her early 40s, Zeamer never missed an annual mammogram. She even took it one step further, by timing her annual gynecological appointments six months after each test, so her breasts were being checked midway between each mammogram appointment. That type of diligence should have been rewarded with accurate information, but Zeamer had a growing, cancerous tumor in her left breast that was left undetected by her annual mammogram. Not once. Not twice. But three times, over the course of that many years. (Here are some other signs of breast cancer you might be missing.)
Mammograms—A good start, but not the gold standard you think
Courtesy Gail ZeamerIf you find Gail’s situation astonishing, unlikely, or even anomalous, that’s hardly the case. Zeamer is part of the 40 percent of women who have dense breasts, a normal type of breast tissue, which often masks cancerous growths on mammograms. Dense breast tissue is also a strong risk factor for breast cancer. Mix those ingredients together, and you’ve got a perfect storm of potentially missed tumors, and missed opportunities for an early cure. Here are the questions you need to ask if you get an abnormal mammogram.
Dense breast tissue is comprised primarily of connective tissue, instead of fat. And herein lies the problem. Like malignancies, connective tissue appears white on mammograms, including those which boast 3D technology. Women with dense breasts often require additional tests, such as ultrasounds, or MRIs, to uncover cancerous tumors. Zeamer’s dense breasts were indicated on her chart, but she was never told. Like most women with this condition, she also wasn’t told that mammograms would often miss tumors in her breasts, but that ultrasounds would not. Here are nine breast cancer symptoms that aren’t lumps.
“My nurse practitioner completely dismissed the whole idea of dense breasts,” says Zeamer, with a note of astonishment in her voice. “When I first discovered a lump, she said it was most likely a cyst, and not to worry. So, I didn’t. The first time I got a mammogram after noticing my lump I was asked. ‘Do you see any changes?’ I said yes, but nothing was noted in my file, and I got the see you in a year letter. At appointment after appointment, I kept being told not to worry, but I asked for an ultrasound anyway. I was told I didn’t need it.” A year later, on Zeamer’s third mammogram after feeling the lump, nothing showed up, again—at least not in her breasts. This time, however, her lymph nodes looked suspicious. She was given, finally, a hand-held ultrasound by a radiologist, who found the hidden tumor, which was there all along. “My 3D mammogram, which I paid for out of pocket because I wanted the best care possible, did not catch it. The tumor remained hidden, but years after it should have been removed, metastasis showed.” At this point, Zeamer was diagnosed with Stage 3C cancer.
Advocating for change while waiting for a cure
Courtesy Gail ZeamerNow an advocate as well as a patient, Zeamer found breast cancer survivor, Nancy Cappello, PhD, founder and executive director of Are You Dense, Inc., and Are You Dense Advocacy, Inc. Dr. Cappello’s breast cancer also went undetected for years, because she has dense breasts. “My diagnosis was a shock. Like Gail, I was diagnosed when I already had Stage 3C breast cancer, which had metastasized to 13 lymph nodes, shortly after getting a mammogram. My first thought was, ‘I’m going to die.’ That’s the irony of early detection, if ultrasounds are not included in the protocol, for women with dense breasts,” explains Dr. Cappello. Up until that point, she had never even heard the term “dense breast tissue.” She would soon learn that it is an even greater predictor of cancer risk, than having two first-degree relatives with the disease. “When I got my report, the same one that had gone to my doctor for 11 years, it included info about my dense breasts. But, I had never been told that I have them. The amount of information in the literature about dense breast tissue and how it masks tumors on mammograms, but not on ultrasounds, has been known to doctors for decades. Women with dense breasts need both,” she adds.
During Dr. Cappello’s treatment, she and her husband starting going the legislative route, so that no other woman with dense breasts would ever hear the diagnosis she had been shocked with. Zeamer is right there with her, and has been advocating heavily in her own state, through her Facebook group, the Wisconsin Breast Density Initiative. Currently, 31 states have laws requiring doctors to inform women if they have dense breasts. Four other states have laws recommending, but not requiring, notification. Only four states currently require that insurance cover the cost of ultrasounds for women with dense breasts.
If you have dense breasts, and your doctor doesn’t think you need an ultrasound, think first of your own loved ones, and then of Zeamer’s, before you tell him or her you don’t agree. “My daughters were 14 and 17 and were home on a snow day when I got the call. Talk about your whole world shifting on its axis. To have to explain this to your children, it’s the most horrible day of your life. And to have them ask, ‘Are you going to live?’ And, to not know the answer, as a mother, I don’t want any other woman to have that conversation with their child,” she says.
Advocacy is good for the soul, but so is adhering to a healthy lifestyle, and pursuing treatment. Zeamer is taking Tamoxifen, a hormonal treatment for breast cancer, and is spending as much time as possible with her girls, and her husband, Steve.
Dr. Cappello continues to fight the good fight legislatively, and to live her healthiest life. “Two things I love, the rest I hate—I love the fact that I work and can inspire women across the globe to do this work—to help others. They want their voice to be heard and to change an injustice. Second thing—when doctors contact me, and thank me”
Neither woman plans to stop, until every state in the country requires doctors to share information about dense breasts, and the truth about mammograms, with their patients. Next, find out the six proven habits that help keep your breasts healthy and cancer-free.