By Jennifer Campisano – When the TODAY show producer who was sitting in my living room asked me what my advice for other women is, the answer came to me easily: you have to be your own advocate. Even if your doctors think you’re crazy, even if insurance doesn’t want to pay for additional testing — if you think something is wrong, you need to speak up.

Which is sort of ironic, because speaking up for myself is exactly how I landed on a segment of the TODAY show to share my story in the first place. Several of us women living with metastatic breast cancer spoke up loudly enough that TODAY took notice.

It started with an article about Joan Lunden, who is battling triple negative breast cancer and opted to appear bald on the cover of People magazine. At the end of the article, it said: “We’re kicking off Breast Cancer Awareness Month on Oct. 1 on the TODAY plaza — and Joan wants you to join! If you have undergone treatment that resulted in hair loss, please join us for what we hope will be an empowering moment for women.”

Until there’s a cure, those of us with Stage 4 will be in treatment for the rest of our lives. And the average lifespan for someone with metastatic breast cancer is just 2-3 years.

A little over three years ago, I was diagnosed with Stage 4 (metastatic) breast cancer at the age of 32. I’d just become a new mom five months earlier. I have no family history of cancer, and it was the last thing on my mind. I would’ve been less surprised if they’d told me I had a tumor growing teeth and hair in my breast.

In the months leading up to my breast cancer diagnosis, I was breastfeeding my son. More than once, I complained to my OB/GYN about a hard spot on my right breast that wasn’t going away no matter how often I expressed my milk. He assured me it was mastitis and recommended a couple of Tylenol and a hot compress. I saw another doctor, who also told me it was “probably nothing,” but asked if I wanted to have it checked out further “when I was done nursing.”

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Suddenly I knew I wanted to have it checked out as soon as possible, whether I was done nursing or not. I pushed for it because I knew something wasn’t right with my body, even amidst all the changes of pregnancy and postpartum I had an unease about this protrusion that seemed to be growing out of my rib and felt like a walnut shell. This second doctor gave me a reference to yet a third doctor, a breast surgeon, who was on vacation but would be able to see me three weeks later.

That surgeon sent me straight to radiology, which is where I learned I had cancer, where my world changed irrevocably. The diagnosis would be confirmed by a biopsy the next week. A PET/CT scan would confirm it had already begun to spread outside my breast. It was Stage 4 — not curable, but treatable.

So I began treatment, and I have done remarkably well. I am one of the lucky ones. I am here today because I spoke up — I advocated — for myself.

For the past thirty-eight months, I’ve been on either chemo or targeted therapies or a combination of both. I’ve been bald twice, lost my breasts and nipples to cancer, and received five weeks of daily radiation therapy that left my skin and my energy levels feeling like I’d spent a vacation partying topless on a beach in Barbados. I was fried, literally and figuratively, but without the fruity umbrella drinks to show for it.

I am one of the lucky ones. I am here today because I spoke up — I advocated — for myself.

So on a whim, I followed up on that article about joining Joan Lunden on the TODAY show plaza. I hoped they might be willing to bring some awareness to the fact that people in treatment don’t always lose their hair, don’t necessarily look sick, and aren’t always able to move past cancer. Don’t get me wrong, I am thrilled for (and a bit envious of) the women who get to wave a pink pom-pom and declare themselves survivors, but I also feel a twinge of trepidation because I know the other side of this disease.

Until there’s a cure, those of us with Stage 4 will be in treatment for the rest of our lives. And the average lifespan for someone with metastatic breast cancer is just 2-3 years.

jen_campisano_bw_childMy little boy is three and a half now. My husband and I are approaching our six-year wedding anniversary. I have been living with what’s known as “no evidence of disease” for eleven months as of the writing of this article. I have hope — I cling to this hope — of living to see my little boy have children of his own, of growing old with my husband, of the next big scientific breakthrough occurring in my lifetime.

That won’t happen without funding for research into how cancer metastasizes (or spreads to other parts of the body, such as the skin, bones, brain, and lungs), and how we can stop it. Currently, it is estimated that Stage 4 breast cancer receives less than 5% of the funding earmarked for research. In the U.S. alone, 40,000 people will die of metastatic breast cancer this year, and that number hasn’t changed much in the past 30 years.

TodayShowResponseJenCampisanoIn what I now attribute to the inexperience of a very young employee at TODAY, I received an email saying that they were only looking for women who could be “bald and bold” to join on their Plaza. There were several of us women with Stage 4 — many of whom who’ve been where Joan Lunden is now, only to have a recurrence, and some of whom, like me, were Stage 4 from the outset — who received the same email response letting us know we weren’t welcome because we weren’t bald.

How could the media continue to trivialize and “pink-ify” our disease, while pushing those of us who will die from it to the sidelines?

I was enraged. How could the media continue to trivialize and “pink-ify” our disease, while pushing those of us who will die from it to the sidelines? Was a sea of bald heads for the sake of sensationalist television really more important than bringing real awareness to TODAY’s massive morning audience? Was this how another October was going to pass?

Dozens of women wrote in to the TODAY show and posted complaints on the show’s social media pages. One or two of us wrote blog posts about it. In mine, I was not shy about my frustration. I called TODAY out for their insensitivity and the fact that they were leaving a huge segment of people — the only ones who will actually die of breast cancer — out of their “awareness” conversation. I used the “F” word a couple of times.

When I hit “publish,” I never expected my post to land on the desk of a senior producer at TODAY who also happened to be a breast cancer survivor. I certainly didn’t anticipate that she’d send me an email asking to talk to her, or that we’d spend nearly half an hour chatting about how to make this right, her apologizing for the way it had been handled in the first place. I couldn’t have imagined that she’d fit me into a segment airing three days later or that I’d be spending half a dozen hours telling my story and coordinating with producers and answering questions about blog posts dating back a couple of years over the next two days to make this segment come together.

When I wrote my blog post, I never could have dreamed that three days later, Joan Lunden would end a TODAY show segment in which I was featured — on national morning television, with an estimated audience of 4.5 million people — with a call for more funding for metastatic disease “because any of us could end up there at any time.” As I watched the six-minute piece with my family and a few close friends the morning it aired, I cried. I was and am incredibly proud how a group of us came together to start changing the conversation about breast cancer.

Little by little, our voices are being heard. We are turning “awareness” into education and, eventually — I have hope — action.


Follow Jennifer Campisano on Twitter and visit her blog Booby and the Beast.

October 13th is Metastatic Breast Cancer Awareness Day, to learn more visit Metastatic Breast Cancer Network.

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