For Stephanie Scott, the diagnosis that she had breast cancer again came eight years after she’d heard those words for the first time.
For Stacey Boyd-Hooks, it was less than two years.
Both women are currently undergoing treatment again for the disease, after being diagnosed with breast cancer recurrence earlier this year.
Breast cancer recurrence statistics are hard to quantify, said Via Christi breast care surgeon Dr. Patty Tenofsky. “It varies so much depending on the type and characteristics of the cancer.”
Scott and Boyd-Hooks, like most cancer patients, hoped they would avoid being a statistic. But the types of cancer they were originally diagnosed with put them in higher risk categories.
While the initial cause and the recurrence are different for each, the two women share some similarities: Both were vigilant in their initial post-cancer care and both are determined to live the best life they can in round two against breast cancer.
Wichita oncologist Dr. Nassim Nabbout, who is treating both Scott and Boyd-Hooks, said that between 10 to 20 percent of breast cancer patients overall will have a relapse sometime in their lifetime.
“The good news for those in relapse is that there’s still a good chance they can be cured or live longer,” said Nabbout with the Cancer Center of Kansas. “It’s becoming more of a chronic disease than an acute disease.”
Facing the fear
The fear of cancer coming back is common. That’s why doctors like Nabbout and Tenofsky help their patients understand what could have caused breast cancer and their risk for recurrence.
“For every patient, it’s different based on the anatomy and biology of the cancer,” Nabbout said.
They remind their patients that new research continues to unveil more about how breast cancer works and to find new drugs to treat it. They remind their patients to stay physically active, keep a healthy weight and eat sensibly since that’s proven to reduce risk.
There are two types of breast cancer recurrence. Local recurrence, the kind Boyd-Hooks has, means the cancer has returned to the same site of the original cancer, while the other kind of recurrence is called distant or systemic, meaning the breast cancer cells have moved somewhere else. That’s the kind Scott has. Her cancer has reappeared, this time in her bones.
In both Scott’s and Boyd-Hooks’ cases, their original breast cancers, while caught early, were among the more aggressive types of breast cancer.
In Scott’s case, being young – just 35 at the time of her first diagnosis in January 2009 – and having a hormone-fed cancer put her at higher risk of cancer coming back. Boyd-Hooks was among the 15 percent of breast cancer patients who have what’s known as triple-negative cancer. It means her cancer wasn’t being fueled by the three common types of receptors. According to the National Breast Cancer Foundation, triple-negative cancer can be more likely to recur.
A lingering pain
Scott never quite felt like she was out of the woods when it came to her cancer.
Following a radical lumpectomy and the removal of 18 lymph nodes, six months of chemotherapy and 36 radiation treatments to fight that first round with breast cancer, Scott’s tumor marker numbers always measured a bit high and then would taper off, she said. In the years after her diagnosis, she was taking tamoxifen to block the estrogen that contributed to the cancer and had also been given shots to shut down her ovaries, which also produce and release estrogen.
Tumor markers, according to the National Institutes of Health, are substances that are produced by cancer or other cells in response to cancer or benign conditions.
Last year Scott’s tumor markers stayed high. And then there was the debilitating back pain she’d been dealing with. Doctors had told Scott the pain was likely caused by degenerative disk disease and spinal stenosis.
“I exercise a lot so I thought I was being too hard on my body,” said Scott, who went on an African safari and has climbed glaciers in Alaska since her initial diagnosis. Her sales job for Bombardier also requires a lot of traveling.
A PET (positron emission tomography) scan had come up negative for cancer, but Scott persisted.
Another PET scan in January confirmed that her breast cancer was back, and it was in her spine, femur and pelvis. Because it had metastasized to other parts of her body, it’s been categorized as stage 4, which means there’s no cure for Scott, only hope that continued advances in medicine will keep it in check.
Earlier this year, singer Olivia Newton-John announced her breast cancer, in remission for 25 years, had come back in her spine. Like Scott, Newton-John had originally thought she was suffering from horrible back pain, it was reported.
“At first you’re scared,” said Scott of hearing she had cancer again. “But I’d been educating myself for years, trying to prepare myself for what might happen.”
Scott, who is serving as the honorary co-chair of this year’s Komen Wichita Race for the Cure, pointed out that the daily drug she’s taking to stop her cancer from growing – Ibrance – was recently approved by the FDA. Once a month she also gets two shots – one to help build her bones and the other to block hormones.
“For the first time, we’re seeing good success with this drug,” said Nabbout, the oncologist. Ibrance, generically known as palbociclib, is a first-line drug that can replace the need for chemotherapy.
Scott, who is on her fourth month of treatment, is counting on that. She’s planning a trip to Iceland this spring.
“I still just live my life and I’ll deal with what’s in front of me,” she said.
The first time Boyd-Hooks discovered she had cancer was in April 2015, when she was applying lotion in the area above her breasts. She discovered a similar lump in the same spot doing the same thing early this year.
“I think I need to stop applying lotion,” joked Boyd-Hooks.
Both times, while she was initially scared for herself, her thoughts went to how her husband and daughter, now 16, both of whom had faced death of loved ones before, would handle it. Boyd-Hooks’ first husband, Joe Boyd, retired CEO of the then-Wichita Convention and Visitors Bureau, had died unexpectedly from acute pancreatitis while the family had been planning a trip when daughter Kylee was just 8. Her current husband, Randy Hooks, had lost his first wife to breast cancer.
“I was more worried about them than about me,” she said.
Boyd-Hooks had never expected to deal with cancer the first time around.
“I really didn’t think anything about it,” she said of finding that first small lump. “Cancer doesn’t run in my family.” She, fortunately, immediately scheduled an appointment to have it checked.
Genetic testing after her diagnosis showed she carried the mutation of the BRCA1 gene, putting her at high risk for both breast and ovarian cancer. To lower that risk, she had a bilateral mastectomy and hysterectomy. Her body could only handle five of the six chemotherapy treatments after that first diagnosis.
Since Boyd-Hooks was dealing with the more aggressive triple-negative cancer, reaching the milestone of being cancer-free for five years would be paramount in lowering her risk for recurrence. Unfortunately, she managed only 17 months.
Following chemotherapy to shrink this tumor, she underwent surgery July 21. She’s halfway through the scheduled 30 radiation treatments.
She’s taken up painting this time around, she said. Her go-to biblical Scripture, she said, is Proverbs 17:22 that reminds one that a joyful heart is good medicine but a crushed spirit saps one’s strength.
When asked about anything else that’s different in fighting cancer again, she responded: “Awareness. I’ve lived it once before.”
The following two events help raise funds for research and to provide local access to care and awareness:
Komen Wichita Race for the Cure
7-11 a.m. Saturday, Sept. 23, at the WaterWalk Plaza, 515 S. Main
Sponsored by Susan G. Komen Kansas, the schedule includes a survivor breakfast, 5K timed run, 5K fun run/walk, race, Kids for the Cure 50-yard Dash, 1 mile family fun walk and survivor parade and celebration.
Making Strides Against Breast Cancer Wichita
8-11 a.m. Saturday, Oct. 14, at the Waterfront, 1551 N. Waterfront Pkwy.
Sponsored by the American Cancer Society, the schedule includes an opening ceremony and noncompetitive 3 to 5 mile walk.