by KIM HILSENBECK
Wendy Scarborough thought she was doing everything right when it came to her health, including breast health.
This slender woman with fiery, long red hair who lives with her husband and two daughters in Chaparral Park was the picture of good health. And she had no history of cancer in her family.
She ate healthy food, didn’t drink too much alcohol, she was a runner, she wasn’t overweight and she started getting mammograms at age 29. She started those early not because of a family history of breast cancer but because she grew up in a household of nurses and doctors.
So, when she was diagnosed with breast cancer in her mid-40s, she was stunned.
“I thought I was being proactive by starting early getting mammograms,” Scarborough said.
Six years ago Scarborough found out she had HER2, which is a type of breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2). This protein, according to research from the Mayo Clinic in Minnesota, promotes the growth of cancer cells.
And surprisingly to her, she was the oldest woman in the group of 10 or so who were diagnosed at the same time at her oncology clinic.
But Scarborough’s cancer wasn’t detected on the mammogram she had just weeks earlier. In fact it was a massage therapist who noticed something wasn’t right.
“She found some swelling under my arm. She asked me if I’d had a mammogram recently. I said, ‘yes, I just did. Nothing showed up,’” Scarborough said.
She went to her doctor and then had a breast ultrasound.
“Five days later, they said, ‘come in, we saw something,’” she said. “By that time, it was a huge tumor and it had already spread. It was Stage 3 at that point.”
Her cancer had already spread to her lymph nodes but not her bones or brain.
Scarborough said she didn’t have any symptoms, though she said she was having some trouble with her right arm. But she just thought her lymph nodes were swollen because she had a cold at the time.
Unfortunately, Scarborough said, mammograms can’t detect all breast cancers.
“But that’s still the preferred method of detection,” said Scarborough, who is now a volunteer speaker for Komen Austin. “There are many false-positives and false-negatives with other types of tests.”
She said her daughters, Samantha, 20, and Riley, 17, will have an ultrasound along with their mammograms because of her history. Her doctors suggested the girls start in their 20s with testing.
“The reason I wanted to offer to tell my story is that 91 percent of women diagnosed don’t have a history of breast cancer,” Scarborough said.
Mammograms, despite their preference among doctors for breast cancer early detection, cannot pick up all types of the disease. The National Cancer Institute, a branch of the federal National Institutes of Health, says false-negative results occur when mammograms appear normal even though breast cancer is present.
Overall, the National Cancer Institute says that screening mammograms miss about 20 percent of breast cancers that are present at the time of screening.
Ultrasounds and MRIs, both of which are very costly, are sometimes necessary to detect certain types of breast cancer. Yet those methods are not the recommended medical advice from doctors for routine preventative breast care.
In Scarborough’s case, once her cancer was detected with an ultrasound her oncologist recommended chemotherapy right away.
“I thought it would be a three-month ordeal,” she said. “Mine turned out to be 18 months just because of the [advanced cancer] stage.”
Twelve of those months, Scarborough said, were spent in round after round of chemo treatments. Then she had a bilateral, or double, mastectomy and breast reconstruction.
During the early part of her diagnosis and treatment, Scarborough said it felt like she was drinking from a fire hose in terms of information, doctors and treatment.
“You get so overwhelmed,” she said. “Your phone is ringing constantly. You get into one doctor’s office and another one is contacting you to remind you of another appointment. Before you know it, you’ve got a breast surgeon and an oncologist, an internist, a radiologist, a pathologist and sometimes additional doctors were pulled in.”
Part of what carried Scarborough through her cancer treatment was the support from her friends and family.
“You begin to learn how many friends you have. The local PTA board I was on donated my wig which was extremely expensive. People helped take the girls to sports practices. Aedin Meagher, a friend and neighbor, organized meals for 14 months. We had so much food we had to buy another freezer,” she recalled. “I have to acknowledge the good things.”
But there were some rough times, too, she said.
“The bad part was coming home and holding it together in front of your family. I’d cry in the shower. I’d cry at night after everyone went to sleep,” Scarborough said. “You put on that tough face, you be the mother.”
As a self-employed interior designer, Scarborough said she dealt with some work-related challenges as well.
“I had people that wanted to cancel contracts with me; sometimes people won’t do business with you if they think you won’t be around. That was kind of hard,” she said.
Scarborough said she also found that some people are uncomfortable talking with you when you have cancer.
“Conversations would just go silent because they didn’t know what to say,” she said.
She also experienced what experts call “chemo fog.”
“You experience lapses of memory loss. I started getting phone calls from businesses saying I sent them the wrong check. I’d get calls from PEC saying I sent them the check for State Farm, and State Farm would call to say you sent them a check for your dentist’s office. You have so much going on, you begin making simple mistakes.”
It was a bit exasperating for Scarborough who was normally on top of everything.
“You feel like you’re losing it,” she said.
Scarborough, now 51, said those 18 months also included encounters with strangers that could be hurtful.
“People get frustrated with you; they can be pretty curt,” she said.
She recalled one time asking a waitress to go over the bill.
“She was really ugly to us. I’ll never forget that day because she was so rude to me. I explained ‘I’m going through some medical treatment and I just need to make sure’…she was terribly rude,” Scarborough said.
That was the first time she got in the car and really cried.
“I wore my wig quite a bit in the beginning just to mask some of that so I didn’t get funny reactions,” Scarborough said, such as stares from people in the grocery store.
She recounted a story from a night at a Hays High School track and field event when she wore a scarf instead of her wig and a group of teenage boys walked by her.
“One of them said something like, ‘oh, nice do rag lady,’ and they all started laughing,” she said.
She didn’t come back with a snappy retort or yank her scarf off to let them see her bald head.
“They’re just kids and they don’t understand,” Scarborough said.
Another time in line at Walgreen’s, she overheard a conversation about the pink for breast cancer awareness month in the store.
“I heard someone say, ‘why do we have all this pink crap? I am so sick and tired of seeing all this pink stuff coming out in October.’ I really wanted to tell them that one in eight people will be affected by breast cancer,” Scarborough said.
During all of those months, Scarborough said she felt the strangest thing about having cancer is that it’s almost a surreal experience.
“There are times when you feel like you’re a figure outside your own body and you’re just following the protocol. When I walked in and saw my hair sitting on a Styrofoam head…” Scarborough paused for a moment to find the words. “It takes you outside of yourself for a moment and you feel like you’re not a human being. You feel non-human.”
She took a moment to find a way to explain what she felt, then continued.
“You’re a vessel that’s just being carried around and poked and prodded and hair is plopped on your head and someone plugs in something to your chest. It’s just very strange. Sometimes people talk to you like you’re not a human being,” she said.
Her relationship with her husband, Tom, survived the ordeal.
“Some women say they got divorced because their partners couldn’t handle it,” Scarborough said. “I discovered that my husband is my best friend. He’s a great listener. If anything, he did a lot of things unexpectedly.”
She said spouses get the raw end of the deal when a partner has cancer.
“People ask how you’re doing and they’re concerned about your vulnerable children at that time. A lot of people don’t ask about the spouse and they’re the ones going through the worst turmoil,” Scarborough said.
Of course she went through her own turmoil during the 18 months of treatment, which included a drug nicknamed “red devil.” Like most patients, she experienced constant nausea. Usually about the fifth day after a chemo treatment she said she would spend eight hours vomiting.
Then there were the brittle bones that kept her from running as she loved to do.
“One drug keeps you sick and vomiting, the other one affects your bones,” she said. “Taxol makes your bones feel like they’re breaking. Remember the old tinker toys and when you pull them apart the whole structure would kind of come tumbling down? It makes your bones very brittle feeling.”
She said she’d swing her legs around to get out of bed; when she stood up, her knees would buckle out from under her.
“I’d kind of wait and in the afternoons I’d get out and I’d start walking, but I couldn’t run. I tried. The nausea is always present. It’s kind of like a really bad pregnancy,” She laughed. “I can laugh now.”