Unlike many other breast cancer patients, Erika Lewis had been worried about the condition for most of her adult life. Her mother was diagnosed with what would be her first bout of breast cancer at age 50, and eventually died of ovarian cancer in 2006. Her aunt had died of metastatic breast cancer in the 1990s. This family history meant that Lewis, 49, of New London County, was at high risk of developing breast cancer herself.
It also meant that she began, at age 31, a regular routine of annual mammograms–almost a decade earlier than is recommended for the average woman.
“I can't stand living in fear, the not knowing,” says Lewis.
Dense breast tissue
Lewis, who is currently working in marketing and is also a freelance proofreader and copy editor, is among the 40 percent of women with dense breast tissue. Therefore, to get a more complete picture of her breast tissue, her doctors added ultrasound to her screening routine.
Soon, “the radiologists were seeing things on the ultrasounds they didn’t like, and I had biopsy after biopsy,” Lewis says. While the bilateral biopsies revealed only benign lesions such as fibroadenomas and atypical ductal hyperplasia (neither of which is cancerous), these types of lesions are considered indicators of a higher risk for developing breast cancer.
In early 2013, Lewis was given the diagnosis of atypical lobular hyperplasia (ALH) in her right breast. This is another “high risk” lesion in which there is an abnormal growth of cells within the breast’s milk-producing glands, called lobules.
At the time, Lewis was living in central Connecticut and planning to move across the state to New London County. Her doctors at the time advised surgery to remove the ALH, so the cells could be completely biopsied. However, not all doctors agree that this is the best approach with which to treat ALH. Some prefer to monitor the condition, rather than insisting on removal and biopsy. She recalls feeling "frantic" about the daunting task of finding new doctors in a new area. "Where do I go?" she recalls wondering. "Who do I see?"
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The ‘not-yet cancer’ patient
Meanwhile, her dad had also moved; his new home was in Branford. In his jaunts around his new town, “Dad met this wonderful man and his wife and they started hanging out,” Lewis says. Her dad’s new friend just happened to be Vincent T. DeVita, Jr., MD, renowned former director of both the National Cancer Institute and Yale's Cancer Center, and professor of epidemiology (chronic diseases) at Yale Medical School. Dr. DeVita is also the co-author, with his daughter, of the highly regarded 2015 autobiographical book The Death of Cancer.
Her dad told Dr. DeVita that his daughter knew nothing about the doctors or hospitals in New London County and wasn’t sure what to do. DeVita replied that if Lewis could arrange it, she should go to Yale Medicine.
“At that time, I was a ‘not-yet cancer’ patient,” Lewis points out. The two doctors examined her and analyzed all of her records, which Lewis had had transferred to Yale Medicine. After a thorough review, the team decided that there was no need to remove the ALH at that point. It could be monitored.
“One of the biggest challenges of being 'high risk' is the surveillance itself,” says Dr. Hofstatter. “The constant cycle of imaging, waiting to see if the scans are normal, and, if not, waiting for biopsy results can be stressful and exhausting for patients."
The irony: “Most women at increased risk do not go on to get cancer, whereas most of the women we see with newly-diagnosed breast cancer do not have strongly identifiable risk factors for cancer,” says Dr. Hofstatter. “We still have a lot to learn about how to accurately identify those women truly at risk for future cancers, and how to best follow them.”
More suspicious findings
When Lewis returned the next year for imaging tests, the breast radiologists at Yale Medicine didn’t like what they saw. The ALH hadn’t changed, but there were suspicious-looking masses on the scans of her left breast. The Yale Medicine team wanted Lewis to have a breast MRI, another type of imaging scan that can detect some cancers that may be missed by a mammogram and ultrasound.
As a screening tool, breast MRI is reserved for women such as Lewis who are at high risk for breast cancer. She had tried to have the procedure while still living in central Connecticut. However, the MRI setup there was intolerably uncomfortable. Lewis had been in so much pain during the procedure that she had become nauseated and had a panic attack. The scan had to be stopped before any useful data had been collected.
Her Yale Medicine experience was very different. “It was very uncomfortable, but I wasn’t in intense pain. And it was much shorter than the test in (central Connecticut),” she says. To her relief, when Dr. Hofstatter and the Yale Medicine team reviewed the MRI with the mammogram and the ultrasound, everything appeared stable and there was nothing new to worry about.
A little more than six months later, however, in early 2015, Lewis had a follow-up mammogram that revealed some new microcalcifications (tiny calcium deposits that appear on mammograms as little white specks) in her left breast. An ultrasound was ordered. When Yale Medicine breast radiologist Jaime Geisel, MD, an assistant professor of radiology and biomedical imaging at Yale School of Medicine, examined Lewis, she noticed a swollen lymph node in her left armpit.
Lewis was advised of the need for an immediate biopsy of the lymph node. “With no time to prepare!” she exclaims. “I was like, ‘OK, go for it!’ Because I can’t stand living in fear, the not knowing.” Lewis went home after the procedure to await a call from Dr. Hofstatter.
“When Dr. Hofstatter called me, I just knew that she was going to have bad news,” Lewis says. “I didn’t cry. I didn't freak out. It was like a rush of burning adrenaline and fear. It was more than a bit surreal." Because of her mother’s fate, Lewis had always viewed a cancer diagnosis as inevitable. She credits her husband, David, with keeping her sane and focused in the days that followed. The two had been married for just over a year when Lewis received the life-changing diagnosis. Predicting that Lewis would benefit from the support of other cancer patients sharing the same diagnosis, her treatment team directed her to Breastcancer.org, a thriving and caring online community and resource for breast cancer patients, survivors, and caregivers.
A plan of attack
Awaiting the results of her pathology report, Lewis thought of her mom. Her mother’s condition had ultimately been diagnosed as triple negative breast cancer (TNBC). In TNBC, the malignant tumor cells lack receptors for the three components that most commonly fuel breast cancer: the hormones estrogen and progesterone and the protein known as HER2 or human epidermal growth factor receptor 2. Only 15 to 20 percent of all breast cancers are triple negative, and triple negative is more likely to affect younger (i.e., pre-menopausal) women, African-Americans, Hispanics, and women with the inherited breast cancer gene mutation BRCA1.
Because their cancers are not fueled by hormones, women with TNBC won't benefit from hormone therapy drugs such as Tamoxifen as part of their treatment plans. Therapies using drugs like Herceptin, which target HER2, are also of no benefit. “I’ve become extremely self-educated in TNBC. There isn’t really anything doctors can do besides surgery, chemo, and radiation for triple negative,” Lewis says, “because they don’t know what causes it, what drives it, what fuels it, or what makes it recur.” She agreed to extensive genetic testing, which ultimately revealed no mutations and provided no clues.
Lewis was not surprised to learn from Dr. Hofstatter that her cancer, too, was triple negative. That meant she would have chemotherapy first (known as neo-adjuvant chemotherapy), followed by surgery and radiation therapy. She told her shocked supervisors at work that she would need to take an official leave of absence. They told her that she could come back whenever she was ready.
For five months, beginning in early July 2015, Lewis traveled from New London County to New Haven for chemotherapy treatment sessions. As expected, the side effects of chemotherapy were difficult. Lewis has Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder that mainly affects the skin, joints, and blood vessels. Her EDS is one of the milder forms of the disorder, but the heavy-duty chemotherapy regimen exacerbated her symptoms. Extreme joint pain and relentless fatigue resulted. Lewis says that she “basically slept for five months.” She was unable to return to work, as her job had required her to be on her feet for hours at a time. On the brighter side, she says that the countless hours spent at Yale Medicine receiving chemo were made easier by caring professionals and a wonderful group of volunteers who did all they could to make the patients as comfortable as possible. The volunteers included an older gentleman who painted beautiful watercolor landscapes at the patients’ request.
After chemotherapy, Lewis had a lumpectomy, surgery to remove the malignant tissue in her left breast and a small amount of healthy tissue around it. In addition, seven lymph nodes in her underarm area were removed. The high-risk lesions in her right breast were also removed. She says that Dr. Killelea and Dr. Hofstatter explained to her that while a complete mastectomy to remove the entire breast was one approach, lumpectomy with radiation has the same survival rate.
Lewis and Dr. Killelea spent a lot of time discussing the various options for surgery, and, in the end, arrived at a plan with which they both felt comfortable. After the surgery, Dr. Killelea sent the tissue to the pathologists to see if any cancer cells remained. There were none. Lewis had received a “pCR,” or a “pathologic complete response” to the chemotherapy, a result which often indicates a better long-term prognosis for patients with TNBC. Because of the way Dr. Killelea performed the surgery, combining complete tumor removal along with plastic surgery techniques to preserve Lewis's physical appearance, the surgery was a complete success.
Two months after her surgery, Lewis underwent eight weeks of near-daily radiation treatments under the guidance of radiation oncologist Meena Moran, MD. Dr. Moran prescribed radiation therapy that would target not only the tumor “bed” where Lewis's cancer had originated, but her whole left breast and the adjacent underarm area in which the cancerous lymph node had been found. Radiation therapy is not always prescribed for breast cancer. In the case of lumpectomy patients, however, targeted radiation therapy after surgery helps to “clean” the tumor bed, surrounding tissue and lymph nodes of hidden cancer cells.
Lewis is now almost two years out from her cancer diagnosis, which is a milestone that she contemplates with trepidation. Triple negative breast cancer has a high recurrence rate, with most relapses occurring within 2-3 years of an initial diagnosis. Despite the uncertainty, Erika and David are deliberately moving forward. She is finally able to work full-time and, with her dad’s help, she and David were able to purchase a small historic home in 2016. The couple has big plans for their little urban oasis, including vegetable, flower, and herb gardens, custom restoration work and a music studio. “I know it’s going to sound clichéd,” Lewis says, “but I’m truly grateful for every day, now.”