This year, nearly 300,000 women will be diagnosed with advanced breast cancer—also called metastatic, stage IV, or invasive cancer—which means the disease has spread beyond the breast and nearby lymph nodes to other parts of the body. And while the treatment protocol can be grueling, some women with advanced breast cancer say the misconceptions about the disease can hurt as well.
These six women who’ve been living with advanced breast cancer for years share what they wish more people knew about what it’s really like to get a diagnosis, what’s surprised them along the way, and how the people in their lives have helped the most.
“Learning to embrace the fact that I will never ‘beat’ cancer has been a process.”
When Boulder, Colorado-based Danielle Thurston was diagnosed with an early stage IV breast cancer diagnosis, the end of treatment meant a new chance at life. Yet two years after that initial diagnosis, the 37-year-old learned that her cancer had spread—and she had to embrace a new mindset altogether. “As an advanced breast cancer patient, the end of treatment is synonymous with death,” says Thurston. “It takes a while to wrap your head around that.”
It’s a fact that’s hard for many of Thurston’s loved ones to understand, too—which is why she often fields comments like, “You will beat this!” It’s a common misconception Thurston finds herself clearing up often. “Even with long, wonderful bouts of remission or no evidence of disease, cancer cells are still circulating in my bloodstream, waiting to take root,” she says. And while some days Thurston finds herself feeling overwhelmed by the harsh reality of her disease, she tries to keep a positive attitude.
“Yes, the treatment can be hellish and have terrible side effects, but I can still live my life,” she says. “It’s a tricky balance between being a realist and an optimist. Unless there’s a cure, I’m a lifer in cancer land. Yet while I live with a disease that currently has no cure, there are always new treatments coming out. I try to focus on the fact that when one treatment option fails for me, there’s another one waiting.”
“Finding—and leaning on—a community who knows exactly what you’re going through is crucial.”
Deltra Kroemer felt like she was having an out-of-body experience when her doctor told her, “You have metastatic breast cancer.” Just a few weeks earlier, the 34-year-old mother of five from New Haven, Connecticut, had found a lump in her breast. And after an ultrasound and biopsy confirmed it was breast cancer, her oncologist ordered multiple full-body scans, which revealed the cancer had spread to her liver. “It was the scariest time of my life,” Kroemer says.
After the initial shock of her diagnosis wore off and Kroemer started treatment, a friend suggested she reach out to an online community of other women who were dealing with the same diagnosis. “I was hesitant to connect at first,” says Kroemer. “But once I did, I quickly realized I needed these people.”
Finding others who knew exactly what she was going through has proven to be helpful beyond measure, says Kroemer. “Metastatic breast cancer is like the black sheep in the cancer community—it’s not all about pink ribbons and celebrating cancer-free milestones,” she says. “That’s not how it’s going to work for me. Yet seeing other women in this group who are working full time and living for years is inspiring—and knowing I can lean on others who have been there is so helpful.”
“I want others to try to understand what I’m going through. Metastatic breast cancer is different than other cancers.”
It was March of 2017 when Miami, Florida-based Abigail Johnston found the lump in her breast. She was 38 at the time, and after a lumpectomy, her doctor told her she had stage II breast cancer. Just three months later, Johnston learned her breast cancer had spread to her bones and was actually stage IV. In fact, there was a 5 centimeter tumor in one of her femurs that was threatening to shatter that bone.
“I had titanium rods inserted into both legs and a preventative hysterectomy, which put me into full menopause,” says Johnston. “We knew the cancer was mutating, and I wanted to do everything I could to maintain a full life with my husband of 12 years and our two sons, who are 5 and 7.”
While the therapies and drugs used to control the spread of Johnston’s cancer often leave her feeling terrible, what’s more challenging are the pithy comments Johnston says she fields far too often. “I get a lot of ‘You’ve got this!’ or ‘You’re the strongest person I know!’” she says. Many will tell her to try things like radical diets or vitamin infusions; others will share stories about distant relatives who beat breast cancer. Yet what Johnston wishes more people knew was that metastatic breast cancer is different than other types of cancer. “I’ll be in treatment until I die,” she says. “Even though my hair has grown back, my skin is no longer gray from the chemo, and on my good days I look, and even feel, pretty healthy, I’m still battling this disease.”
The best way to show support? Ask more questions, says Johnston. “The most helpful people in my life are the ones who simply say, ‘How are you today?’ or ‘I came across this information, would it be helpful for you?’” she says. “If you’re thinking about someone going through this metastatic breast cancer or another condition like it, reach out. I appreciate when someone says, ‘I’m thinking about you. I don’t know what to say, but you’re on my mind.’ That right there is perfect.”
“A positive mindset has helped me for 30 years.”
When Gayle Carson was diagnosed with breast cancer in 1987, she was shocked. “I was 49 years old, exercised every day, ate healthy foods, and didn’t drink or smoke,” says the 82-year-old from Miami, Florida. “The only reason they found it was because my husband urged me to get a mammogram.”
Over the course of the next few years, Carson had lumpectomies, mastectomies, chemotherapy, radiation, and she’s been on countless medications to keep her cancer at bay. Still, it came back—and in 2010, she found out it had spread to her bones. While the relentless nature of Carson’s cancer might have set most into a spiral of dark thoughts, Carson started thinking of herself as a S.O.B.: Spunky Old Broad.
“I don’t feel sorry for myself—I’m going through what I’m going through,” she says. I go to bed with a smile, get up with a smile, have two cats I love, and do my best to keep a positive mindset. And I think that’s really made a difference over the course of the last 30 years.”
“I have limitations that are difficult for others to understand, but speaking to my loved ones about them has helped.”
A few months after being diagnosed with advanced breast cancer, Liz Rodriguez-Cole began each day with 20 spoons. Each time she did something that drained her energy—like brushing her teeth, or folding a load of laundry—she would put down a spoon or two. When the spoons were all gone it meant she had reached the limit of what she could accomplish that day. It was way a way for her to illustrate to her then 4-year-old daughter, Cameron, how she needed to conserve her energy for things that were important and why she needed to rest so often.
“Another advanced breast cancer patient told me about this ‘spoon theory’ and it has been so great,” says the 30-year-old from Glen Burnie, Maryland. “It helped my boyfriend and daughter understand that I need a lot more rest than the average person—and it’s a good reminder of that for me, too.”
After all, since her stage II breast cancer diagnosis at age 23, Rodriguez-Cole’s life has been a lot different from that of most women her age. After surgery and chemotherapy, she thought she was in the clear. Then, two days before her 29th birthday, she found out the pain she’d been having in her chest was actually cancer, which had spread to her lungs and liver.
“At my age, most people don’t have to take four naps a day, and when the stock market tanks, they think, ‘It’s OK, I’ve got time for my money to build up again.’ But my energy is zapped after doing the littlest tasks, and I don’t have all the time in the world for my 401k to grow back,” says Rodriguez-Cole. These new realities have been a challenge to embrace, but important to be honest about, she adds. And the spoon theory has helped others understand how she’s feeling.
“Now, I don’t need to carry around the actual spoons,” says Rodriguez-Cole. “My daughter will see me yawn and say, ‘Mommy, you’re out of spoons! Go take a nap!’”
“It is possible to live a long, fulfilling life with metastatic breast cancer.”
When Sandi Spivey, 67, of Laguna Niguel, California, was first diagnosed with metastatic breast cancer, her doctor told her she had a 90% chance of dying within three years. “I had already completed stage II breast cancer treatment, and I was cautiously enjoying what I hoped was a cancer-free future when I learned it had spread to my bones,” she says.
Now, 20 years later, Spivey is not only still alive—she’s thriving, thanks in large part to the growing number of treatment options available for advanced breast cancer patients. “In 1988, there were only seven lines of therapy available to people living with metastatic breast cancer,” says Spivey. “Today, more than 100 therapies are available.”
However, while much progress has been made on the treatment front, Spivey says she was shocked by how much more work needs to be done to help advanced breast cancer patients access healthcare benefits. “Under current government regulations, metastatic breast cancer patients are subject to a five-month waiting period for Social Security Disability Insurance and a 24-month waiting period for Medicare benefits to kick in,” she says. “This is time we do not have and it comes at a cost we can’t afford.”
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