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: “Thirty percent 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 33, 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.”