Advocating for Yourself When You Have Metastatic Breast Cancer

BCS_Blog_DTOP_BelowTitle_336x280

Having breast cancer is hard in general, but things are ten times worse when you find out it’s metastatic.

Metastatic breast cancer, also known as stage IV, is cancer that has traveled from the breast to vital organs and is considered incurable. Roughly 155,000 Americans are currently living with metastatic breast cancer and patients who have it will jump from treatment to treatment for the rest of their lives. Some of those treatments will work for a while and then stop being effective; others will never work at all. And eventually, the cancer will win—unless and until we come up with a way to cure it. 40,000 people die each year from metastatic breast cancer, but only about 5 percent of breast cancer research money is spent on metastatic disease.

Although you may not be holding your breath for a cure during your lifetime, there are still things you can be doing to improve your quality of life and the length of your life now—and to improve the lives of others. Your cancer may not be curable, but it is treatable, and plenty of people lead long and fulfilling lives with metastatic breast cancer.

The problem is that, even though metastatic cancer is treatable, not everyone acts like it is. You may run across people, doctors included, who find it easy to give up on metastatic breast cancer patients because the situation seems so hopeless. They define “incurable” and “untreatable” as synonyms, knowing the fight will eventually be lost one way or another. But if you could live a fuller life because of treatment, it is worth it to get treatment, right?

And that’s why you have to know how to advocate for yourself. We all deserve to live our best possible lives, and you shouldn’t be willing to let anyone take an opportunity to live a better life away from you.

Lisa J. Frank, an attorney living with stage IV cancer that has spread to her brain, has survived cancer five times (breast cancer four times and melanoma once). But once her cancer was considered terminal, she found she had to change her attitude and her game plan in order to get the help she needed. After full-brain radiation failed to keep twenty-something tumors from re-growing in her brain, none of the oncologists she spoke to had a helpful or hopeful answer for her. But she kept reaching out to whomever she could think of, including an oncologist she’d met while volunteering with the Young Survival Coalition. Through her networking, she was able to get involved in clinical trials and get treatments she never could have gotten at her original oncologist’s office.

“Think about what you want, where you want it, and who can help get you there,” she advises.

“Dig deep into your resources; through your circles, you could find someone who fits the description of what you are looking for. Find the right doctor for you. Never be afraid to ask for help. When someone offers help—say yes! And never give up hope.”

There are dozens of ways you can create awareness for yourself and for others who have also experienced the devastating diagnosis of metastatic breast cancer. Consider what your unique strengths and weaknesses are and then decide whether you’d be willing and able to perhaps start a blog or vlog, submit your story to a publisher to share with the world, or be the “metastatic voice” at breast cancer fundraising events (or organize your own event). Brainstorm what media companies you could perhaps get to interview you, think about the best way to make use of your own social media pages, reach out to doctors and hospitals that specialize in the experimental treatments you hope will help you, and maybe create a support group that doubles as a way to network with other metastatic patients.

Whatever you do, don’t let people give up on you, and don’t give up on yourself. If you run across doctors who aren’t willing to help you to their fullest ability, find new doctors. If you’re not getting the support and answers you need where you are, seek new routes to reach out to people who can help you.

“I am here because I used my contacts, I accepted help, and I called my oncologist late at night when I was in pain,” says Frank. “You can do this. You can be your own best advocate.”

Lockerdome BCS – desktop
Medianet BCS
Elizabeth Nelson is a wordsmith, an alumna of Aquinas College in Grand Rapids, a four-leaf-clover finder, and a grammar connoisseur. She has lived in west Michigan since age four but loves to travel to new (and old) places. In her free time, she. . . wait, what’s free time?