When I first told people I had metastatic breast cancer – Stage 4, MBC – I received two types of responses.
The first is, “Never heard of it. What is it?”
It means the breast cancer has moved to your lungs, liver, bones, and/or brain. It cannot be cured.
For who did know what MBC is, essay I wrote for NPR last spring describing my diagnosis is like dropping a bomb. People I hadn’t seen in 25 years wanted to make me stop on their summer road trip. Dozens of email contacts, looking forward to visiting.
But it is difficult to plan. The one thing most of us have in common with MBC is that we’re really, really tired.
Beyond that, we don’t have much in common: We’re all ages, races, cultures, and genders. MBC is omnivore.
Our lives have been transformed by this beast. But we still have lives. We are not dying from metastatic breast cancer, we are doing our best to live with it. However, statistics tell us many of us will not survive this disease. No one knows when they will die, whether they will have cancer or not. But most MBC patients look over their shoulder more.
My oncologist has treated many patients with cancers similar to mine. They’ve survived, or are surviving, two or three, or four, or five, or six or seven years. Which, if any, of those numbers would be mine? How do I get the most out of my day, when all I want to do is take a nap?
I talked to Variety MBC patients and asked how they chose to use their time, when the only thing they knew for sure was that it would likely be too short. In this December of another pandemic year, as we all grapple with how to deal with ongoing and frightening uncertainty, my fellow countrymen and I on MBC hope for words of encouragement. Our stories can help others chart the course.
Advocate steps up
She didn’t start out as a campaigner for black patients with cancer. Jamil Rivers himself is also a breast cancer patient and doing well. Other patients would stop by the chemotherapy room and ask her for advice.
“They say, ‘Hey, you seem fine. You know, can you share what you know?’ And then it just kept growing from there”- into a nonprofit organization founded by Rivers, called the Chrysalis Initiative.
“I always hear that the reason why Black women die at a higher rate from breast cancer is because of social and biological differences, poverty and all these different reasons,” Rivers said. . “But then, as I started to learn more, I found that the biggest contributing factor was actually racism.”
Now Chrysalis intervenes on behalf of Black women, like someone who’s just had surgery.
“They tried to get her home that same day,” Rivers said. “They don’t want to give her a home nurse or provide care. And it’s all based on the assumption that she’s Black, so she must be poor. She doesn’t get enough insurance. dangerous.”
Rivers expanded her advocacy by becoming president of Metavivor, a nonprofit that raises funds for metastatic breast cancer research. Rivers credits her with helping thousands of women, including herself. She has had NED – no evidence of illness – for several years now. Therefore, she hopes to have the strength and determination to help the thousands of more Black breast cancer patients moving forward.
Wait, what? Men get breast cancer too
It came as a huge shock when Michael Kovarik was first diagnosed in 2007.
“I remember as if, sit down and go, wait a minute, wait a minute. Women get breast cancer. Men don’t get breast cancer. So it was a huge shock,” he told me when we first talked. “There are people who don’t believe it at first. And so it’s a way to educate people a lot in the beginning. But I think that makes it more realistic for me.”
He had a relapse in 2010 and was diagnosed with metastatic disease in 2015.
“The fatigue is not real,” says Kovarik. I’m having a hard time right now, but hopefully things get better. “
He became active in the Male Breast Cancer Alliance and the MBC Alliance and, like Jamil Rivers, in Metavivor. Metastatic disease is the primary killer of breast cancer only 7% of breast cancer research is devoted to to cure it.
“We [need to] get answers to stop this disease,” Kovarik said when we last spoke in August. Michael Kovarik passed away on MBC on September 22, 2021. He is survived by his longtime teammate, Tim Watkins.
Where did everyone go?
Tiffany Hawkins is 52 years old and says she has always been a fighter. She was diagnosed with MBC in 2017.
“The doctors were really surprised at how long I’ve been gone.
All the more surprising because Hawkins has soundwave MBC, which means you can’t treat it with hormone therapy, as you can with most Stage 4. It’s most common in Black women, like Hawkins, and mortality is in This group is higher than any other racial or ethnic group in the United States, in 26.8 per 100,000 annual.
But recently her tumor is growing. “Can be from less than a centimeter to five – within a month,” Hawkins said.
Meanwhile, as her cancer grows, she notices, her friends are slowly disappearing. She has two older sons and they are all supportive, but her boyfriend of 5 years has abandoned her. The other friends stopped calling.
“I don’t think they’ve known me all these years and don’t care about me – but you don’t know,” Hawkins said. “I mean, these are long-term relationships. You know, some people just really show their true colors, I call it putting their feet on your neck when you’re down.”
I asked who on her support team. She told me she didn’t have one. I said I would be her support team. Call me anytime. She said OK. I haven’t heard from her yet.
So Hawkins The Fighter reluctantly accepted his fate. “I’ve really learned to be alone and be okay with it,” she told me. “I want to live on my own for as long as possible. 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. Bad news: You might not see her grow up.
Margaret Loniewska was diagnosed by MBC at the age of 40, around the same time she found out she was pregnant. The doctors were hesitant to let her have a regular MBC scan, because the baby was growing inside her.
“And then, a month later, my back pain became unbearable, [to] where I was actually hospitalized. And at that point, they were like, we’re going to try to do some very conservative CT scans and MRIs. And it showed that I had metastases like along the spine, in the ribs and hips. And yeah, I don’t feel great either, because, you know, when Mariana (her daughter) was growing up, my ribs basically broke from when she was growing. “
Loniewska gave birth by cesarean section when Mariana was 27 weeks pregnant. The mother and daughter were released from the hospital shortly before the first COVID-19 lockdown in Canada, where they live.
Loniewska said: ‘She’s young, but she’s ready to go home. “I’m 42 now and feel like I’ve aged a lot.”
But she hangs there. She’s on five different drugs, some endocrine, some for bone, some chemotherapy. And constantly running through her mind were worries about the future.
“Like, what kind of life would I be able to give her and for how long? It was a very dark time.”
Her gloom began to increase as she began to do her own research. Loniewska is a Ph. toxicologist. She put that expertise to work and made a welcome discovery.
“I realized that a lot of MBC’s patients did well and the treatments worked for a while. And then [when the treatments stop working] you have switched treatments. You know, there are always hopeful stories about people, living [with MBC] 5 years, 10 years, 15 years. “
Or even more. We all hope to be one of them. But because the 5-year survival rate is only 28% for women and 22% for men , we know many of us wouldn’t.
There’s a saying in the MBC community: It’s the worst diagnosis, but you get the best people. I have met some good people. And since a 2020 National Cancer Institute study estimates that 168,000 women in America Living with metastatic breast cancer, I don’t think I’ll be making new friends any time soon.
