We Need Better Screening Methods for Detecting Breast Cancer

My breast cancer was missed for more than 2 years. How are mammograms alone an effective imaging tool for women with dense breasts like mine?

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MY BREAST CANCER was probably a decade in the making, although I only became aware that there might be a problem in 2014, when I noticed some slight pain in my left breast. A routine mammogram and ultrasound found benign cysts in my dense breasts, which most likely explained the pain, I was told, but nothing more troubling than that. In 2015, I had another routine mammogram, still complaining about the pain in my left breast; once again, I was given the all-clear. The following year, the radiology center started offering three-dimensional mammogram imaging, which is reported to be more accurate at detecting breast cancer than two-dimensional digital mammograms; again, the test found no suspicious signs of cancer.

Hilary Gan, MA

Still, I couldn’t let go of the nagging doubt that everything was fine. In addition to the pain in my left breast, I could also feel a lump that I thought moved from near my armpit toward my nipple. My professional background is in pediatric health care, and I have a lot of knowledge about pediatric cancers, but I’m completely unfamiliar with adult cancers, including breast cancer, so I made an appointment with my primary care physician for a general checkup and also to query her about the pain and lump in my breast.

After examining my breasts, she echoed what I had been told repeatedly over the past 3 years: the pain and mass were most likely the result of fibrocystic breast tissue. “Nothing to worry about,” she said. However, she offered to give me an order for an ultrasound if I was still concerned. I took the order but waited months to make the appointment. After all, I reasoned, I had been diligent about keeping to my yearly mammogram schedule and already had an ultrasound screening, all of which were negative for breast cancer. And I had been reassured by various radiologists and my primary care physician that the pain and the mass in my left breast were probably just the result of dense breast tissue.

But, again, I couldn’t shake the feeling that something wasn’t quite right, and I finally made an appointment for the test. This time, the mass raised alarm bells, and the radiologist recommended a tissue biopsy of the tumor, which confirmed stage 2B invasive ductal carcinoma, estrogen receptor–positive and progesterone receptor–positive breast cancer.

Coping With a Cancer Diagnosis

MY FIRST reactions to the diagnosis were anger and frustration, because this cancer, in my mind, had been missed for more than 2 years. After the tissue biopsy was completed, a biopsy marker was placed near the area of the malignant tumor to use as a guide for additional tissue removal during surgery. When I asked to see the marker on the film, all I could make out was a white, fuzzy-looking image of my breast but no visible tumor. The radiologist explained that both dense breast tissue and tumors look white on mammographic film and that my tumor was hidden behind the dense tissue, which is why it kept getting missed on prior mammograms.

If this is the case, I wondered, how could anyone have declared that my mammograms were negative for breast cancer? I don’t understand how mammograms alone are a good cancer screening tool for women with dense breasts like mine.

The next emotion I experienced was fear about what I was about to face: surgery, certainly, and then I wasn’t sure. I immediately went into action mode and met with a surgical oncologist, who told me matter-of-factly that I would need a lumpectomy and radiation therapy, and then I could move on with my life and everything would be fine. But her words weren’t convincing, and I sought additional information to learn all the treatment options for my stage and type of breast cancer. Somehow, I instinctively knew that the best course of action was to have a contralateral prophylactic mastectomy. I wanted the cancer gone and didn’t want to risk a cancer recurrence down the line when I was older and less able to tolerate aggressive treatment.

After meeting with a plastic surgeon to discuss breast reconstruction after the mastectomy and talking again with my surgical oncologist about my treatment options, I went ahead with the double mastectomy. A pathology examination of the tissue in my healthy right breast found numerous precancerous cells. I’m glad I listened to my inner voice and had both breasts removed. It was comforting to know I had made the right decision.

Dealing With Long-Lasting Effects of Cancer

EVEN WITH both breasts removed, according to the results from an Oncotype DX Recurrence Score, I fell into the category of high potential for recurrence, and my oncologist recommended a short-course combination chemotherapy regimen of cyclophosphamide and docetaxel, followed by tamoxifen for 10 years. Because I couldn’t tolerate tamoxifen well, and the chemotherapy had put me into premature menopause, I was prescribed the aromatase inhibitor exemestane for an unspecified period. After being told I would need just a lumpectomy and radiation therapy to cure my cancer, this new information was a lot to digest.

Today, I’m cancer-free, but the disease and its aftermath are never far from my mind. I’m experiencing arthritis-like symptoms from the aromatase inhibitor I take every day. And although my breast reconstruction surgery was successful, I wasn’t a candidate for nipple preservation, so my breasts look different.

“Survivorship education should start at the beginning of a diagnosis, not at the end of treatment.”
— Hilary Gan, MA

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Of course, I’m grateful that I’m now healthy and cancer-free, but I wish everyone on my medical team had done a better job of explaining what I could realistically expect from both my treatment and my breast reconstruction surgery. I’m disappointed that my oncology team did not spend time educating me about how I could minimize treatment side effects through exercise and nutrition, schooling me on the sexuality and intimacy challenges that are inevitable with a breast cancer diagnosis, or listening closely enough to my concerns. Survivorship education should start at the beginning of a diagnosis, not at the end of treatment.

Living With New Normal

Cancer has taught me important life lessons, top of which is never to take anything for granted, especially good health. It has given me a new appreciation of the ordinariness of every day. I no longer worry about minor inconveniences. Life is too short.

It has also left an indelible mark on me. Rather than relegated to my past, cancer is with me today and will be with me in the future.

Ms. Gan is the Hospital Programs and Services Director for Teen Cancer America. She lives in Boston.

Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.