Among hundreds of conversations I’ve had during preschool drop-offs and pickups, there’s one that will always be vivid in my memory. My new mom friend Tami told me, as we shuffled our two-year-old girls down the crowded hallway, that she had to get a biopsy. Something suspicious had shown up during a routine mammogram. She didn’t seem crazy-worried, and I wasn’t either—as I reassured her that afternoon, several of my friends had found a lump and it turned out to be something benign.
Except this time that’s not what happened. First Tami found out that she did have breast cancer. Then, as she sat in the car during a weekend road trip with her husband, mentally preparing for the double mastectomy and chemotherapy that lay ahead, she got the truly devastating phone call: The cancer had already spread to her liver. It was metastatic, otherwise known as stage IV. There would be no mastectomy because surgery would do no good. There is no cure for metastatic breast cancer. There is only buying time.
The good news: It’s been more than four years, and thanks to a drug that was approved by the FDA just three months before Tami’s diagnosis—chemo in pill form, delivered right to her doorstep, complete with skull-and-crossbones warning stickers—you’d never guess she’s sick. She still has her beautiful wavy hair, still sweats it out at boot camp the way she did the morning of that “routine” mammogram, still keeps up with the day-to-day crazy of raising two young girls. The bad news: This drug, like all the others, keeps working for only so long, and at some point, there will be no more drugs to try. That’s why the average life expectancy following a metastatic breast cancer (MBC) diagnosis is just 24 to 36 months.
“The perception is, ‘Oh, you have breast cancer, you’ll be fine.’ People think you can just have a double mastectomy and be cured. Now I know that even for stage II, a mastectomy is just the first step of a yearlong process.”
You read those numbers right. Statistically speaking, my friend is living on borrowed time. Time that’s broken into segments: Every four months Tami gets a PET scan to see whether the cancer has spread. She takes a train into New York City to have radioactive liquid injected into her veins before lying on a table that slides into a narrow scan tube. We in her expansive network of friends hold our collective breath, praying that no suspicious zones light up. She texts us an all-clear around 3 p.m. the next day, and we unleash our relief using an excessive number of emoji and exclamation points. Then we all go on with our lives—until next time.
Most days Tami and I don’t talk about her disease directly. We talk about her amazing activism for the cause—traveling to meet with cancer researchers from MIT, managing her Facebook group (@METAvivorsOfNJ), sitting on government panels (and recently, Elizabeth Warren’s couch!), organizing an annual fundraiser that raises nearly $50,000 in one night. But mostly we just talk about which dance class to sign the girls up for or what we’re doing over school break. Despite carrying one of the heaviest emotional burdens of anyone I know, Tami lightens the lives of everyone around her, changing the energy of any room with her full-hearted laugh. She makes us pack our calendars with fun plans like there’s no tomorrow (deadlines schmeadlines, let’s go to the beach midweek!). She is one of the most positive people I know. But this Breast Cancer Awareness Month, I’ve been thinking about all of the people affected by this disease who could really use a Tami in their life—for so many reasons. So I finally sat my friend down to really talk. Here are nine things Tami wishes you knew, whether you’ve had breast cancer yourself, you love someone who does (your mom, an aunt, a friend), or you know someone who’s stage IV and have no idea how you can help.
Don’t wait to start self-exams and mammograms.
“You’re never too young to start self-exams," Tami says, "and you should go for an annual mammogram as soon as possible, certainly by 40, but earlier if you have a history of breast cancer in your family.” Be your own advocate on the latter; controversially, the American Cancer Society recently raised its recommended age for starting annual mammograms from 40 to 45, yet most insurance companies will still cover routine mammograms at age 40, often younger. “If I’d followed the age-45 guideline, I wouldn’t be alive today,” Tami once said to me. Terrified, I went and got my first at age 38 by asking my ob-gyn to write me a prescription. At the time I had no family history, but insurance did cover the test. Now, lo and behold, I do have a family history: My mom is currently being treated for breast cancer. I’m so glad that I already got a couple “baseline” mammograms—ones that future tests can be compared against to look for changes.
No type of breast cancer is “no big deal.”
Since one in eight women get breast cancer, almost all of us know someone who’s had early-stage and seems perfectly healthy now. “The perception is ‘Oh, you have breast cancer, you’ll be fine,’” Tami says. “People think you can just have a double mastectomy and be cured.” She did, when doctors initially thought she was stage II. “In my mind, I said, Okay; I know there’s a high survival rate; I don’t care: I don’t need my hair, I don’t need my boobs. Now I know that even for stage II, a mastectomy is just the first step of a yearlong process of reconstruction and treatment.” And much too often, the story doesn’t always end there: “30% of early-stage breast cancer will eventually come back as stage IV or metastatic, where it has spread to other organs or the bones, and there is no cure for that.”
“I wake up every day worrying about whether I’ll be there to watch my children grow up.”
Picture an airplane falling from the sky every single day.
And each time, 115 people die. Imagine the hysteria and outrage we would all feel. Yet that’s how many people die each day from metastatic breast cancer. I found this analogy so powerful when Tami first shared it with me. Research leading to new treatments for MBC is the only thing that can reduce that number, yet just 3% to 5% of U.S. breast cancer research funding currently goes toward that. How to begin to shift that imbalance: Find out what percentage of dollars from any breast cancer donation you make will go toward research, versus awareness and programming. Better yet, donate directly to metastatic breast cancer research. METAvivor is currently the only U.S. organization dedicated solely to awarding annual peer-reviewed stage IV breast cancer research grants. To raise awareness for this cause, metastatic breast cancer has its own awareness ribbon, one with stripes of green (representing spring and the triumph of life over death), pink (indicating that the cancer originated in the breast), and teal (representing spirituality and healing). More than 80 iconic landmarks around the globe have showcased the colors during Breast Cancer Awareness Month in 2019.
There are so many people just waiting for that next drug to come out.
“Will there be another drug by the time this one doesn’t work?” It’s the question Tami’s friend Monica was asking until she recently passed away at age 35, leaving a three-year-old daughter behind. “What gives people hope is the fact that they are coming out with more drugs, so the money and the research does make a difference, even if it's not curing the disease.” Ultimately, MBC patients know that they will need to resort to clinical trials. “There are amazing resources out there now to help patients navigate clinical trials,” Tami notes. “One of the best websites available was designed by a metastatic patient for metastatic patients. Called the Storm Riders Network, it pulls trials from all over the world into an extremely user-friendly interface.”
Nobody should have to pay $2,543 a month for their chemotherapy copay.
Yet that’s exactly what Tami was doing at one point, after her husband switched jobs and insurance plans. The nonsensical reason: “Currently, I.V. chemotherapy falls under medical coverage, yet oral chemotherapy, which can be taken at home, falls under prescription coverage, hence the financial burden falls on the patient,” says Tami. When she had the $2,543 monthly copay, she was able to apply for and eventually secure financial aid from the drug manufacturer—but going through that process is just one more source of stress for patients already dealing with their diagnosis, treatment, and nonstop medical bills.
People are working to fix the system, and you can help.
“People are always asking what they can do and how they can help,” Tami says. “One place to start is by supporting two bipartisan bills currently in Congress that will better the quality of life for breast cancer patients.” One bill—the Cancer Drug Parity Act (HR1730/S.741)—says that whether your chemo comes in I.V. or pill form, insurance should cover it the same way. The other bill—the Metastatic Breast Cancer Access to Care Act (HR2178/S.1374)—would fast-track federal disability and health care benefits for people with MBC. “Currently there’s a five-month waiting period to receive Social Security disability benefits and a two-year waiting period to receive access to Medicare, for people younger than 65,” Tami says. “This bill would waive those waiting periods, which is especially important for a diagnosis where only 24% of people are projected to live more than five years.”
“This diagnosis has made me want to live my life with purpose, and I encourage you to do the same for the issues you care about most.”
Here’s how you can help move these bills forward: Every bill has a version in both the House and Senate (see those bill numbers in parentheses above? HR means House of Representatives and S is for Senate). You can find your representative here and your senator here, plus links to sites with their email addresses. Contact them and ask that they sign on to the bills as sponsors. “When a bill gets more and more signatures, the committee will be encouraged to bring it to a vote,” Tami explains. “Every two years there’s a new Congress, and if a bill isn’t brought to a vote within those two years, the bill dies and you have to start all over again.” Another way to show Congress that people care about these bills: METAvivor hosts a Stage IV Stampede in Washington, D.C., each year—anyone is welcome to attend.
Patients can have a say in what research gets funded.
Cool thing to know: The Department of Defense has something called the Congressionally Directed Medical Research Program (CDMRP), which helps divvy up funding for breast cancer ($130 million this year), as well as many other medical conditions. “What’s cool about it is that they include patient reviewers—they call them consumers—on the panels with scientists and doctors to help determine which research will have the most impact and which grants will be funded,” Tami says. “You travel to Virginia, are paid as a consultant, and get to have a voice in the process.” Find out how to get involved here.
It can be very lonely having a disease like this.
Imagine dealing with such a serious illness yet most people you interact with on a daily basis have no idea. “There are a lot of people out there who are not feeling well or are going through 'scanxiety' or emotional stress in an invisible way,” Tami says. “A friend of mine is going through chemotherapy every week, and only two people at her work even know. I wake up every day worrying about whether I’ll be there to watch my children grow up. People might have a hard time talking to their loved ones about their fears or their thoughts because they don’t want to hurt them. I don’t want to talk to my mom about it, or even my husband, because I feel like I’m just hurting them even more. Even though it’s my diagnosis, it affects everyone in my life.” What helps is when people don’t stop checking in. If you know someone living with a serious illness, she recommends you just keep asking, “How are you doing today?” “The ‘today’ is so important, because each day is so different,” she says. She also recommends finding a local support group on Facebook (like her group, METAVivors of NJ) and passing along this inspiring website to anyone living with a terminal illness: A Story Half Told.
There are tricks for staying positive, and they really work.
No matter how busy she gets, my friend takes time to pause and consciously acknowledge the things she’s thankful for each day. “Sometimes I think I’m actually happier than most people, because my threshold for happiness is so low,” she says. “Just being alive is enough!” When dark, depressing thoughts creep in, she has a trick to literally snap herself out of it, flicking herself on the wrist as a physical reminder to stay in the present moment. And she constantly repeats a new personal mantra that keeps her moving forward with a positive outlook: “Make each day meaningful.” “This diagnosis has made me want to live my life with purpose, and I encourage you to do the same for the issues you care about most,” she says. “Use your voice, speak up. One person can make a difference. Maybe this is a cause that’s important to you, maybe it’s not, but finding something that is and making that your purpose really does lead to a more fulfilling life. Despite my diagnosis, I make it a point to practice gratitude every day and really am determined to make each day meaningful.”
Originally Appeared on Glamour