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We're not dying of metastatic breast cancer. We're living with it

Aaron Marin for NPR

Updated December 12, 2021 at 8:01 PM ET

When I first told people I had metastatic breast cancer — Stage Four, MBC — I got two types of responses.

The first was, "Never heard of it. What is it?"

It means the breast cancer has migrated to your lungs, liver, bones and/or brain. It's incurable.

For those who did know what MBC is, the essay I wrote for NPR last spring describing my diagnosis was like dropping a bomb. People I hadn't seen in 25 years wanted to make me a stop on their summer road trips. Dozens reached out on email, wanting to visit.

Our lives have been transformed by this beast. But we still have lives. We're not dying of metastatic breast cancer, we're doing our best to live with it.

But it's difficult to make plans. One thing most of us with MBC have in common is we're really, really tired.

Other than that, there's not a lot we have in common: We're of every age, race, culture and gender. MBC is an omnivore.

Our lives have been transformed by this beast. But we still have lives. We're not dying of metastatic breast cancer, we're doing our best to live with it. However, statistics tell us many of us won't survive this illness. No one knows when they're going to die, whether they have cancer or not. But MBC patients are looking over their shoulders more than most.

My oncologist has treated many patients with cancers similar to mine. They survived, or are surviving, two, or three, or four, or five, or six or seven years. Which, if any, of those numbers will mine be? How do I wring the most out of every day, when all I want to do is nap?

I spoke to diverse MBC patients and asked how they've chosen to use their time, when the only thing they know for sure is it will likely be too brief. In this December of yet another pandemic year, as we all grapple with how to deal with ongoing, frightening uncertainty, my MBC compatriots and I hope our stories can help others chart a path.

The advocate steps up

She didn't start out as an advocate for Black patients with cancer. Jamil Rivers was a breast cancer patient herself, and doing well. Other patients would drop by the chemo infusion room and ask her for advice.

"They were saying, 'Hey, you seem to be doing OK. You know, can you share what you know?' And then it just kind of grew from there" — into a nonprofit Rivers founded, called the Chrysalis Initiative.

"I would always hear that the reason why Black women were dying at such a higher rate from breast cancer was social and biological differences and poverty and all these different rationales," Rivers says. "But then, as I started finding out more, I found that the biggest contributor was actually the racism."

Now Chrysalis intervenes on behalf of Black women, like one who'd just had surgery.

"They were trying to send her home that same day," Rivers says. "They did not want to provide her with an at home nurse or to provide care. And this was all just based off an assumption that she's Black, so she must be poor. She must not have sufficient insurance."

Rivers has expanded her advocacy by becoming president of Metavivor, a non-profit that raises money for metastatic breast cancer research. Rivers figures she's helped thousands of women, including herself. She's been NED — no evidence of disease — for a couple of years now. So she hopes to have the strength and the determination to help thousands more Black breast cancer patients going forward.

We [need to] get answers to stopping this disease.

Wait, what? Men get breast cancer, too

It came as a heavy jolt when Michael Kovarik was first diagnosed in 2007.

"I remember just like, sitting down and going, wait a minute, wait a minute. Women get breast cancer. Men don't get breast cancer. So, it was very much a shock," he told me when we first spoke. "There were people that didn't quite believe it at first. And so, it was a way of educating people a lot at the beginning. But I think that made it more real to me."

He had a recurrence in 2010 and was diagnosed with metastatic disease in 2015.

"The fatigue is unreal," Kovarik said. "I'm struggling right now, but hopefully things will get better."

He became active in the Male Breast Cancer Coalition and MBC Alliance and, like Jamil Rivers, in Metavivor. Metastatic disease is the primary lethal form of breast cancer, yet only 7% of breast cancer research is devoted to curing it.

"We [need to] get answers to stopping this disease," Kovarik said when we last spoke in August. Michael Kovarik died from MBC on Sept. 22, 2021. He is survived by his long-time partner, Tim Watkins.

Where did everybody go?

Tiffany Hawkins is 52 years old, and says she's always been a fighter. She was diagnosed with MBC in 2017.

"The doctors are truly amazed at how long I've been going. I'm spoiled; I almost forgot that I had this."

It's all the more surprising because Hawkins has triple negative MBC, which means you can't treat it with hormonal therapy, as you can with most Stage 4s. It's most common among Black women, like Hawkins, and the death rates are higher in this group than for any U.S. racial or ethnic group, at 26.8 per 100,000 annually.

But lately her tumors have been progressing. "From maybe less than a centimeter to five — in like a month," says Hawkins.

Meanwhile, as her cancer has grown, she notices, her friends have been dwindling away. She has two grown sons, and they're supportive, but her boyfriend of 5 years ghosted her. Other friends have stopped calling.

"I don't think that they would have known me that many years and not care for me — but you just don't know," Hawkins says. "I mean, these were long term relationships. You know, some people just really showed their true colors by just, I call it, putting their foot on your neck while you're down."

I asked who is in her support group. She told me she didn't have one. I said I'd be her support group. Call me any time. She said OK. I haven't heard from her.

So, Hawkins The Fighter has reluctantly accepted her fate. "I've actually learned how to be alone and be OK with it," she told me. "I would like to be self-sustaining for as long as I can. I don't want to be a burden. I want all my flowers now."

Timing can be everything

The good news: You're having a baby. The bad news: You may not get to see her grow up.

Margaret Loniewska was diagnosed with MBC at the age of 40, around the same time she found out she was pregnant. The doctors hesitated to give her the usual scans for MBC, because of the baby growing inside of her.

"And then, a month later, my back pain became unbearable, [to] where I actually was admitted to the hospital. And at that point, they're like, we're going to try to do some very conservative scans and an MRI. And it showed that I had metastases like all down my spine and in my ribs and in my hip. And yeah, I was not feeling very great either, because, you know, as Marianna [her daughter] was growing, my ribs were basically breaking from just her growing."

Loniewska got a C-section when Marianna was 27 weeks gestation. Mother and daughter were released from the hospital right before the first COVID-19 lockdowns in Canada, where they live.

"She was tiny, but was ready to go home," says Loniewska. "Now I'm 42 and feel like I'm much, much older."

But she's hung in there. She taking five different drugs, some hormonal, some for her bones, some chemo. And continuously running through her mind have been worries about the future.

"Like, what type of life will I be able to get give her and for how long? It has been a very dark time."

Her gloom began to lift when she began doing her own research. Loniewska is a Ph.D. toxicologist. She put that expertise to work, and made a welcome discovery.

"I realized that a lot of MBC patients were doing well and the treatments work for a while. And then [when the treatments stop working] you switched treatments. You know, there's always these hopeful stories of people, living [with MBC] five years, 10 years, 15 years."

Or even more. We all hope to be one of those. But since the 5-year survival rate is just 28% for women and 22% for men, we know many of us won't be.

There's a saying in the MBC community: It's the worst diagnosis, but you meet the best people. I've met some good ones. And since a 2020 National Cancer Institute study estimates that 168,000 women in the U.S. are living with metastatic breast cancer, I don't think I'll be running out of new friends any time soon.

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Corrected: December 11, 2021 at 9:00 PM PST
In a previous version of this story, the name of Margaret Loniewska's daughter was misspelled as Mariana. Her name is Marianna.
Ina Jaffe is a veteran NPR correspondent covering the aging of America. Her stories on Morning Edition and All Things Considered have focused on older adults' involvement in politics and elections, dating and divorce, work and retirement, fashion and sports, as well as issues affecting long term care and end of life choices. In 2015, she was named one of the nation's top "Influencers in Aging" by PBS publication Next Avenue, which wrote "Jaffe has reinvented reporting on aging."