My Friend Has Stage IV Breast Cancer. Here Are Some Things She Wishes You Knew

Curated via Twitter from Glamour’s twitter account….

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.

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.

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. “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.

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.

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.

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.

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 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.

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