Second Opinion Changed Breast Cancer Treatment, Preserved Fertility

Everyone’s breasts get lumpy when they’re nursing a newborn, right? That’s what Leslie McGuire thought to herself in 2014. At age 30, Leslie was breastfeeding her first son, Franklin.

“Breastfeeding wasn’t easy for me, and I had a lot of breast changes after my pregnancy, so when I felt a lump, I just assumed it must be related to that,” says the Kansas City, Missouri, resident. But with an extensive family history of breast and ovarian cancers, Leslie was concerned when the lump didn’t disappear even after she stopped nursing the 5-month-old.

She thought a visit to her obstetrician would provide reassurance, and it did – to an extent. Given her family history and based on the doctor’s exam, Leslie’s physician recommended a mammogram and breast ultrasound but suspected a blocked milk duct.

“I still wasn’t really worried,” Leslie recalls, even as she set a follow-up appointment to have the lump aspirated, a procedure in which a fine needle withdraws fluid. “Everyone thought it was good I was being proactive, but no one really thought it was cancer.”

However, the lump proved too solid for aspiration, so Leslie had a biopsy instead. Three days later, she learned that the lump was a malignant tumor. “I was shocked,” she says. “I mean, I was 30 and had just had a baby! I was at work when I got the call, and I was a mess.” Receiving a cancer diagnosis was scary enough, but Leslie’s situation became more alarming when the type of cancer was identified.

Aggressive and unusual

There are 3 major types of breast cancer. The largest proportion, about 60%, of breast cancers are hormone-receptor positive. “There are 2 receptors in the tumor that are tested for hormone sensitivity – estrogen and progesterone. If those receptors are positive, then it’s called hormone-receptor positive breast cancer,” explains Qamar Khan, MD, a medical oncologist and director of the breast program at The University of Kansas Cancer Center.

About 20% of all breast cancers are known as HER2-positive. These tumors test positive for a protein receptor called human epidermal growth factor receptor 2 or HER2. This cancer pathway is related to abnormal breast cell growth.

“If all 3 markers, the receptors for estrogen, progesterone and HER2, are lacking in the tumor, it’s called triple-negative,” Dr. Khan continues. This relatively uncommon type of breast cancer was Leslie’s initial diagnosis when she saw a breast surgeon the day after she learned her biopsy results.

“The problem with triple-negative breast cancer is that you don’t really know what’s driving the cancer, as opposed to the other types,” Dr. Khan explains. “For instance, in estrogen-receptor positive cancer, we know the estrogen in the body is driving the cancer. In HER2-receptor positive cancer, we know the HER2 pathway is driving the cancer. If we know the drivers of the cancer, then we can block those drivers or pathways.”

For the 15% of patients diagnosed with triple-negative breast cancer, treatment is more challenging due to this lack of a clear association with a hormone or biological pathway that feeds the cancer. Triple-negative breast cancer is more commonly diagnosed in younger women and tends to be more aggressive, more often metastasizing to other organs or tissues.

Clarification and hope

Not only was Leslie scared, she soon became confused when her medical oncologist at an area hospital disagreed with the breast surgeon’s initial diagnosis. “At the time, I had no experience in healthcare except for having a baby,” Leslie says. “I thought breast cancer was just breast cancer. I knew nothing about the different types.”

Not only did Leslie receive conflicting information, but she was told that treatment would leave her unable to have more children, another bombshell in an already devastating week of bad news.

Leslie was fortunate to have strong family support. Both her husband, Bryan, and mother accompanied her to those first appointments, and Leslie’s mom quickly suggested she visit The University of Kansas Cancer Center for a second opinion. The University of Kansas Cancer Center is 1 of 54 National Cancer Institute-designated comprehensive cancer centers nationwide. Patients at NCI-designated centers have a 25% greater chance of survival than those at other cancer centers.

Leslie describes herself as “dazed and confused” at this point, but she saw no harm in one more doctor’s appointment. That appointment was with Dr. Khan. “I do whatever my mom says anyway,” Leslie says with a laugh now. “I really trust her. She’s very methodical and organized – she’s awesome.”

Before she even stepped into Dr. Khan’s office, Leslie noticed a positive difference between her previous doctor’s office and the cancer center. She recalls the atmosphere as lighter and more hopeful from the beginning. That positive vibe continued as Dr. Khan confirmed that Leslie’s cancer was triple-negative but then asked whether Leslie hoped to have more children.

“I told him, yes, I would like to have more kids, but I didn’t think that was even in the realm of possibilities,” Leslie says. However, as part of the overall care plan created for Leslie, Dr. Khan recommended she see a specialist in fertility preservation who works with patients at the cancer center. He assured her that preserving fertility would be a priority in developing her treatment plan.

“Dr. Khan got on the phone right then and there and set up that appointment for me. He also told me that he and his colleagues treated this type of cancer frequently and were aware of all the latest research and advancements in care,” Leslie says. “The whole experience was light-years better than what I had just gone through at the other doctor’s office. I felt so much more at ease, and I knew this was the place I needed to be on this journey.”

Preserving fertility as a priority

Courtney Marsh, MD, MPH, a reproductive endocrinologist and infertility specialist, helps patients at the cancer center navigate their treatment while also preserving fertility. She consults with patients before they begin chemotherapy or radiation treatments, which can threaten reproductive health.

“If our patients who want to preserve their fertility are single, we can freeze some of their eggs,” Dr. Marsh says. “For married patients, we can freeze embryos for future implantation.” As with all cases at the cancer center, she stresses that each patient’s situation is carefully considered, and the best options are chosen based on individual factors.

“Here, we handle more complex cases than other places because we work as a multidisciplinary team,” she adds. “We also have research protocols available for patients who qualify, and we’re among the few centers that can freeze tissue so we can work very quickly to harvest eggs and sperm.”

That speed was apparent to Leslie as she had eggs harvested days before beginning her cancer treatment in June 2014.

Aggressive disease, aggressive treatment

Of patients who have triple-negative breast cancer, about 15% carry the BRCA1 gene mutation. Leslie is one such patient. “My dad’s mother died of breast cancer, 2 of his sisters have had ovarian cancer and a cousin has had breast cancer twice – so I suspected there was a genetic link,” she says. However, Dr. Khan recommends that all triple-negative breast cancer patients have genetic testing regardless of family history.

Emerging data at the time of Leslie’s diagnosis indicated that a specific type of chemotherapy, known as platinum-based chemotherapy, is more effective in BRCA1-positive patients. Leslie received the platinum-based drug, carboplatin, along with a second chemotherapeutic drug, Taxotere. The powerful combination worked immediately, noticeably shrinking Leslie’s tumor after the first treatment.

“The main purpose of chemotherapy is to kill any cancer cells that could be hiding in the body and waiting to cause future metastases,” Dr. Khan says. “That’s why in triple-negative breast cancer, we give chemotherapy even before surgery. We don’t want to delay treatment of any micro-metastases.”

In addition to affecting the choice of chemotherapy drugs, Leslie’s BRCA1 status caused her to make another aggressive move. “I knew I had a higher chance of my breast cancer coming back, so I opted for a bilateral mastectomy and reconstruction following my chemo,” she says.

A month after completing chemotherapy on October 20, 2014, Leslie had surgery. She describes the experience as “extremely painful,” but noted that her breast surgical oncologist, Jamie Wagner, DO, helped put her at ease. “I was so scared when they wheeled me into the OR,” Leslie recalls. “And I remember Dr. Wagner putting her hand on my arm and looking down at me with such care and compassion – I knew I would be okay.”

Dr. Wagner discusses the option of “risk-reducing mastectomy” with all BRCA1-positive patients and says heightened awareness and earlier detection are contributing to more patients opting for this procedure. “A risk-reducing mastectomy, also called a prophylactic mastectomy, can decrease risk of developing a future breast cancer by 95%,” she says. “But it’s not a simple decision. Mastectomy comes with potential side-effects and its own risks, such as loss of sensation in the breasts and lymphedema, a swelling in the arm and surrounding tissues.”

However, for Leslie, the surgery was worth the peace of mind. “When they did the surgery, they also checked my lymph nodes for any cancer cells,” she says. “I was really anxious about that. I had written in my journal over and over again: ‘My lymph nodes will be negative, and I will live a long and happy life with my husband and 2 children.’”

Leslie’s affirmation proved true: Not only was there no evidence of cancer in her lymph nodes, but the cancer in her breast also completely disappeared with chemotherapy, and just a year later she and Bryan received another surprise – Leslie was pregnant again.

Expanding family and new career

“I’m grateful for the help of the fertility specialists, although I unexpectedly got pregnant without any medical intervention. The drugs we used in my chemo were less toxic to the ovaries than some others, even though they were highly effective for triple-negative breast cancer,” Leslie says. On June 6, 2016, Freddy joined the McGuire family after a completely normal pregnancy.

Leslie continues to guard her health proactively. In addition to her regular follow-up appointments with Dr. Khan, every 6 months she sees Andrea Jewell, MD, a gynecologic oncologist at the cancer center. The BRCA1 mutation also increases risk of ovarian cancer, so Leslie receives periodic ultrasounds and blood tests to help monitor her ovarian health.

When Leslie turns 40, Dr. Jewell will surgically remove her ovaries, a decision she and Leslie came to after careful discussion of risks and benefits. “I’m keeping my ovaries for now because I want the option to expand my family in the next few years,” Leslie notes.

Looking back, Leslie muses that seeking a second opinion at the cancer center probably saved her life and definitely saved her fertility. “I was upset that I could have taken a different treatment route, based on an incorrect diagnosis, and Freddy would never have been born as a result,” she says. “My dad suggested I turn that anger into motivation to help other women learn to advocate for themselves … and then the email arrived.”

With a background in marketing and communications and a career she enjoyed, Leslie wasn’t looking for a new job. When an email landed in her inbox that contained a link for a job opening in marketing at The University of Kansas Health System, she clicked out of curiosity. The job was for a strategic marketing senior liaison in oncology. “I thought, ‘This is what I need to be doing,’” Leslie says.

Leslie now spends her time working to help others understand the benefits of seeking care at an NCI-designated cancer center, where medical specialists and researchers in a variety of fields work together to provide the best treatment options for their patients. She also loves watching her boys grow and becomes slightly emotional when she notes that Franklin has started school, “and I’m just so grateful to be here to see it.”

Meanwhile, Dr. Khan and his colleagues continue to make strides in treating triple-negative breast cancer. In September 2019, research presented at the European Society of Medical Oncology pointed to new immunotherapy treatments that appear to be highly effective in triple-negative breast cancer.

“The standard of care could soon change based on this research, and the hope now is that for patients just being diagnosed with triple-negative breast cancer, the cure rate will increase dramatically,” he says. “Leslie’s story is one of hope and success, and now there’s even more hope of curing this disease in many, many more women.”

One final point both Leslie and Dr. Khan stress: Always have new or unusual breast lumps examined. Even young women and new mothers should be vigilant about breast health. “Catching her cancer early was important to Leslie’s good outcome,” Dr. Khan notes. “No matter how advanced the treatments, early detection is still key.”