Breast cancer is ugly, so don’t tie it up with a pink ribbon, this woman says

April Doyle is not a fan of pink ribbons.

A single mother with a son in first grade, the Visalia woman has been living for three years with metastatic breast cancer – breast cancer that spreads to other parts of the body.

The pink bows, trinkets and T-shirts brought out each October for breast cancer awareness month cover up the raw, unvarnished truths about breast cancer she wants to reveal.

“Breast cancer shouldn’t be tied up in a pretty, pink bow,” Doyle says. “There’s nothing pretty about it. It’s traumatic and it’s terrifying and it’s ugly.”

Renegade breast cancer cells have settled in Doyle’s bones.

She has cancer on her right femur, left and right hip bones, sternum and spine. There’s a spot on her right arm.

Metastatic breast cancer is painful. And it’s not curable.

She will never be “cancer free” and will be on treatment for life to remain “stable,” a word preferred over “remission.” Metastatic breast cancer patients can live for decades, and Doyle, 39, plans to do just that – but she’s also blunt: “The average life expectancy is 36 months … and I’m at that now … I’m on borrowed time, as they say.”

Doyle is not looking for pity. She dumped a boyfriend who thought he was doing her a favor by going out with her. “I still have a very, very full life,” she says.

She wants a frank conversation about metastatic breast cancer. About 40,000 women and men (men are diagnosed, too) die of breast cancer each year in the United States. Doyle was chosen as one of 80 people nationwide to be trained this year to educate and inform the public about the disease.

Metastatic breast cancer is isolating, Doyle says.

By and large, early-stage breast cancer gets most of the attention. She doesn’t begrudge the emphasis on early detection and treatment. Seventy percent of women diagnosed with early-stage breast cancer will not have a recurrence. But in 20 percent to 30 percent of people, the cancer comes back in the bones, liver, lungs or brain.

And there’s little said about recurrence, Doyle says. “When I was diagnosed with metastatic breast cancer I had no idea what it was. I never even understood that breast cancer could move to your bones. I thought, ‘Well, isn’t that bone cancer?’ ”

Life changes in an instant

Eight years ago, Doyle found a lump in her right breast. She had a lumpectomy, but tests showed some cancer cells remained and she had both breasts removed and then reconstructive surgery.

She had several months of chemotherapy, which caused her to begin menopause.

At that time Doyle was 31 and married. She had been trying to have a child for a year. Her doctor said she would not be able to become pregnant. She was crushed but bounced back, returning to work at the Social Security office in Porterville where she now is the manager. Once the chemotherapy ended, she regained both her energy and her thick, blond hair.

And she became pregnant. Colin Doyle was born in 2011. “He’s my little miracle,” she says.

At the all-important five-year survivor breast cancer checkup, the doctor said “you’re doing fabulous” and sent her to get blood tests. She took a celebratory selfie in the office parking lot. She cried with relief. “I was a breast cancer survivor.”

“I felt like I had a new lease on life,” she says. “I get why there’s so much focus on survivorship and the pink ribbons and the Race for the Cure and all those types of things.”

But her exhilaration was short-lived. The blood work showed the cancer had returned. Doyle moved instantly from being a cancer survivor to a woman with Stage 4 metastatic breast cancer.

She was 36, recently divorced and the mother of a 2-year-old.

“The first year I was metastatic, I thought about it all the time – all the time,” she says. Out of sight of Colin, she would fall apart.

“I cried daily, and not just like a cute cry. I ugly-cried.”

Fighting the cancer

Dr. Christopher Perkins, a Fresno breast cancer specialist, is treating Doyle. He can’t say why cancer cells that had lain silent for five years woke up suddenly and attacked her bones. “We don’t know what flips that switch from dormancy to ‘OK, we’re alive again and we’re going to raise our nasty heads up,’ ” Perkins says.

But doctors have an arsenal of medications to stomp down metastatic breast cancer, depending on the type of cancer cell.

“Emphasize that metastatic does not mean death,” Perkins says. “For the most part, Stage 4 breast cancer patients do remarkably well.”

Doyle doesn’t look or act sick. She juggles her job and motherhood while finding time to write about breast cancer and to spend time with family and friends. For her birthday this year, she flew to New Orleans, where a friend met her. Next year, her birthday will be spent in Hawaii with Colin, she says.

“She’s amazing,” says cousin Stephanie Moore of Visalia.

There are times when Doyle falls apart, Moore concedes. “I told her … we’re so strong all the time … you’re entitled to have a breakdown once in awhile.”

Moore often goes to doctor appointments with Doyle. Sometimes it’s not easy to watch, such as recently when Doyle winced as nurses searched for a vein to start an intravenous line.

Doyle’s cancer cells are attracted to estrogen. Part of her treatment included surgery to remove her ovaries two years ago. Menopause at 37 is not fun, she says.

She is on a second round of chemotherapy treatment. The first drug therapy lasted for about nine months before failing to stop the cancer’s progression. She now takes an oral chemotherapy drug every day and once a month she gets two chemotherapy shots and a bone-building drug that is given intravenously.

Every few months, she has a bone scan to see if the cancer has progressed. “Basically, you live from scan to scan,” she says.

She has pain in her lower back and tailbone area. Even just sitting at her kitchen table, Doyle has a throbbing pain between her shoulder blades. But the pain is manageable, and breast cancer has, if anything, made her busier than ever.

About a year after the metastatic diagnosis, Doyle says, “I got down to the business of living. If I’m only going to have a certain number of days, then I’m going to live these days.”

A bit of snark

Spending time with her son is her first priority. She’s taken him to Disneyland and the Central Coast so many times that boxes brim with pictures of the trips, and many are displayed in frames in her living room. “I try to make memories all the time.”

She also has become active in the metastatic community. She’s known in online breast cancer groups for her blogs and stories, which get to the nitty-gritty of living with the disease, but are told with a sense of humor that Doyle describes as a bit “snarky and irreverent.”

She dreamed of being a book editor and worked for years at the B. Dalton bookstore in Clovis. Writing about her breast cancer has been therapeutic. This year it also led to her becoming a member of The Underbelly, an online breast cancer magazine. She contributes stories and manages marketing and social media.

Susan Rahn, a founding member of The Underbelly, says Doyle’s vision aligned with the magazine’s goals. “We’re hoping to change the narrative of breast cancer,” she says. “It’s overwhelming and it’s really not fun. It really kind of sucks. But nobody talks about that.”

Doyle can’t be accused of shyness. She describes in detail an unflattering and, frankly, humiliating position she had to take for a hip bone biopsy. “It was not painful,” she says. “It was just embarrassing.”

She sees no purpose in keeping secrets. “This is my life and there’s no point in my trying to bury it under the rug.”

Living Beyond Breast Cancer, a national breast cancer organization, liked Doyle’s honesty and openness. In October, she will be among the 80 Hear My Voice advocates brought to Memphis to be trained to tell their stories and educate the public about metastatic breast cancer.

“I am confident April will add her original voice to the metastatic experience,” says Cathy Ormerod, vice president for programs and partnerships.

Breast cancer’s gifts

Doyle is not afraid to express her anger.

She’s mad that metastatic breast cancer has not received the money for research that is needed to find a cure.

According to the Metastatic Breast Cancer Alliance, only 7 percent of funds from major public and private sources from 2006-13 went toward the study of metastatic breast cancer.

“I’m angry at the fact that people are still dying at the same rate for breast cancer that they were 40 years ago,” Doyle says.

She wants awareness campaigns to include information about breast cancer recurrence. And she wants people not to be afraid to ask her how she’s feeling. “They’re afraid it’s going to upset me, and it’s like I get more upset if you don’t ask. I want to know that you care.”

But she’s not all gloom and doom. Breast cancer, while taking so much away, has added invaluably to her life, she says.

“I believe in my heart I would have never become pregnant if I hadn’t had breast cancer. There was something in the universe that prevented me from having a child before I went through that chemotherapy the first time.”

For years she had body image problems, but now at 30 pounds over her normal weight, she has never felt more comfortable with her body. “I am more accepting of who I am,” she says. “That, too, is something that cancer has given me.”

And she makes time for what she wants to do.

She goes on short hikes and bike rides with Colin, even when she has to push herself. “He’s still entitled to his childhood,” she says. “I want him to know someday that I did everything I could to make sure he still had that while I was living with this.”

Ever the realist, Doyle says breast cancer will likely shorten her life. And it would be easy to look at life from its end point, but she refuses.

“I don’t want to get caught up in how it ends, and not be enjoying life now.”

This story was originally published September 27, 2017 at 11:30 AM with the headline "Breast cancer is ugly, so don’t tie it up with a pink ribbon, this woman says."