Let me start by saying I believe in science and medicine. I’m vaccinated. I have regular check-ups. Still, eight years ago, I decided to stop having mammograms.
I needed a break. For the previous five years, I had had multiple mammograms, breast sonograms and biopsies. My breast images showed diffuse atypical hyperplasia (atypia) and calcifications.1 The radiologist who read my films pointed out that calcifications could be cancerous or precancerous. The only way to know for sure was to biopsy. 2
My first biopsy confirmed atypia—cells that were not cancerous but might become cancerous. The radiologist referred me to an oncologist. I’ll never forget the first time I went into her office. It was populated with women in various stages of cancer treatment. Many were bald or wearing headscarves. I remember the anxiety I felt that day as I waited wondering if I soon would be joining their ranks.
My doctor, I’ll call her Dr. Faberge, a woman a few years younger than me, was the picture of vibrancy and health. She was a mother of three and ran marathons. Dr. Faberge assured me she was here to help me through this journey and to help me battle this horrible disease.
Dr. Faberge was calm and methodical. She did a cancer risk assessment. It turned out that my immediate risk for developing breast cancer in the next ten years was less than 3%. With age, however, that risk would increase and by the time I reached my 70s, the risk would be well above 30%. “The best way to manage this,” she said, “would be to remove the tissue where you have diffuse calcifications.” She recommended a “quadrantectomy,” the removal of one quarter of my left breast, and a prescription for tamoxifen. I would have to take tamoxifen for at least three years, although she recommended five years, just to be safe.
I returned home that afternoon shaken. I watched my nine-year-old-twins playing in our yard and started to cry. I didn’t want to get cancer and I didn’t want to die.
The next day I called my friend Marietta. Her son was the same age as my two, and we often spent time together. When I told her my story, she sighed and spoke. “The same thing happened to me.”
It turns out that Marietta had also had atypical breast cells and her doctor also recommended surgery. Her quadrantectomy had been successful, and she’s had no further issues. “My breast shape was permanently altered,” she said. She was healthy, but she also added that she was unsure she made the right decision. Her doctor later told her that the surgery was the best way to ensure she never got cancer, but that her risk had been very low. “Did I even need that surgery?” she asked.
I consented to have a surgical breast biopsy, but I did not want to have the quadrantectomy. My oncologist’s face darkened when I told her my decision and said, “okay, let’s try six months of tamoxifen and see where we are.”
Six months later, my mammography was much the same. There were atypical cells that might or might not be cancer. Dr. Faberge and I had another heart-to-heart. She understood my reluctance and recommended that she present my case to the Tumor Board. This was a multidisciplinary group of physicians—gynecologists, surgeons, oncologists, and pathologists—to consider my case and make a recommendation. “That way,” she said, “you’ll have the benefit of hearing what a group of experts has to say about your case.”
A month later the tumor board unanimously agreed that I should have the quadrantectomy. “Are we ready to move forward?” Dr. Faberge asked.
In the intervening weeks I had started my own research about my condition and possible treatment. As a former registered nurse, I recalled the heyday of hormone replacement therapy (HRT) in the 1990s. In those days, every menopausal woman “needed” HRT to treat menopausal symptoms. I recalled my own mother, who adamantly refused to take HRT. She had fibroid tumors, which would continue to bleed with HRT. Her gynecologist recommended that she have a hysterectomy to remove the tumors. I remember her telling me, “I’m not going to have surgery just so I can take a pill.”3
It turns out, my mother was right to refuse the surgery and HRT. By the early 2000s, doctors discovered that women on HRT had a higher breast cancer risk4 and that the benefits of HRT—better bone density and treating menopausal symptoms—did not outweigh the increased risk of cancer and heart disease.
So perhaps my mother’s experience was echoing in my head when I declined the quadrantectomy. I was honest with Dr. Faberge. I didn’t want to unnecessarily have surgery to remove tissue that, at that point, was healthy and might never develop cancer. I also didn’t want to have a breast that was permanently deformed by the surgery. She assured me that “things move around and start to look normal eventually.” Then she said, “you could also have a mastectomy.”
That statement shocked me. Why would I remove a perfectly healthy breast? I asked her if, given my history, I should confirm that I didn’t carry the breast cancer gene. Given my family history, she said, she was certain I didn’t have it.5
Over the following five years I fell into a pattern—mammogram, biopsy. I had a total of six biopsies (two needled and four surgical). Each time the surgeon whittled away at the atypical tissue, focusing on cluster areas and asking me to consider a quadrantectomy or complete mastectomy.
The thing that made me adamant that I didn’t want the extra surgery was the biopsy results. Each time, they came back negative. No cancer. Just atypia. I want to be clear: if I had at any time had cancer in those many biopsies, I would have willingly had surgery and whatever other treatment necessary.
Perhaps I might have continued on this path for many years, but something happened during my last biopsy. The procedure required a trip to radiology where the radiologist uses mammography and thin wires to pinpoint the location where the surgeon will remove the tissue for biopsy. That day the area in question was so small the radiologist had trouble locating it. She took one film, then another. after three I decided to start counting the number of times, she irradiated my breast trying to locate the spot. In the waiting room, my surgeon told my husband not to worry, the delay was in radiology. He asked, “if they’re having trouble finding the spot, does Deb really need the surgery?”
The surgeon told him if it wasn’t located soon, she’d call the biopsy off.
Unfortunately, the radiologist was undeterred. She shot 27 films that day before she finally placed the needle. I’m not sure why I didn’t stop her at 7 or 10 or even 15. I had become complacent in the process. But a week later when the pathology report came back negative, I decided I would take a mammogram holiday. I didn’t know if my atypia would one day cause cancer, but I knew that exposure to radiation does. And I wasn’t going to allow myself to continue to be treated for something that simply did not exist.
I did not have cancer. Why was I being treated like someone who did?
That last biopsy and mammogram took place in 2012. I had other appointments to have the screening, but I cancelled. My gynecologist, a patient, reasonable woman, listened to me as I told her what had happened. She still wanted me to have a mammogram. It was the best option for early detection.
I couldn’t disagree with her. In 2014, my mother was diagnosed with invasive breast cancer at the age of 74. She had surgery and radiation and has been cancer-free since.
Many times, I wondered if I did have breast cancer. I have never had a breast lump, but the atypical cells inhabited my psyche like a bad dream. I religiously had annual physical exams and took the doctor’s order for my mammogram screening home, promising to make an appointment. My family’s insurance changed, and we joined a new medical practice. That doctor ordered blood work and a mammogram, and finally, eight years later, I was ready to give mammograms another try.
When I went to the breast imaging center, I was surprised how patient the clerks and technicians were when I explained my story. They were kind, and although clearly alarmed by my mammo holiday, they didn’t scold or judge. My breast was placed on the breast torture device, they took their images, and that was that.
“If there are any irregularities,” the radiology technician said, “we’ll call you back in within two days for additional images.”
I went home and waited. A week later, I finally called my doctor to get my results. My mammogram was normal.
How could that be?
I suspect, and I can only suspect (because I’m not an M.D.), is that my atypical cells disappeared after menopause and the decrease in estrogen. That’s what the tamoxifen was supposed to do (I had to stop taking it, too, because of it caused severe range mood swings) . I went through menopause early (best thing that ever happened to me), so it’s been about eight years since I had my last period. Menopause is essentially the cessation of estrogen and progesterone, so perhaps the atypical cells were unable to flourish.
To be sure, some readers might find my story anti-medicine. The bottom line is this: I was fortunate. My atypical cells could have become cancer, and this could have been a “woe as me” essay about how I should have had regular mammograms over the last eight years. I’m not recommending that anyone skip their annual screening.
Yes, there could always be cancer “out there” hiding in our breasts. I understand why doctors who work with women with invasive breast cancer opt for more treatment. It’s a horrible disease, and I admire the fact that they want to prevent the disease in as many women as possible. But overdiagnosis with mammograms (and exposure to radiation) and biopsy is also a problem.
What I am here to say is that the aggressive treatment and detection of breast anomalies has led to over treatment in too many cases, many just like my own. This is something that has been well documented in the medical literature6 and an issue that more women need to be aware of and talk about.
https://www.mayoclinic.org/symptoms/breast-calcifications/basics/definition/sym-20050834
https://www.mayoclinic.org/diseases-conditions/atypical-hyperplasia/symptoms-causes/syc-20369773
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6780820/
https://www.breastcancer.org/risk/factors/hrt
I did have genetic testing earlier this year. I do no carry the breast cancer mutation.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4589101/