Around the Web - Mets Edition

Today, October 13th, was National Metastatic Breast Cancer Awareness Day. Metastatic (or Stage 4) breast cancer is what happens when tumor cells leave the breast and set up shop elsewhere in the body, usually the lungs, liver, brain, bones, or skin. Of course, I'm weird and had spots in my lymph nodes and spleen.

My links today are primarily focused on metastatic breast cancer. Consider this a dose of true October awareness. And if you're feeling so inclined, a great place to donate (even $5) is www.metavivor.org, which allocates 100% of its grants to funding research on metastatic breast cancer.

Want to Learn More about MBC? Here's a Good Starting Point.

"While MBC claims the lives of 40,000 women and men in America every year and 20-30% of those diagnosed with early stage breast cancer will go on to develop recurrent, metastatic disease, awareness remains low and only 7.1% of breast cancer research investments over the last dozen years were focused on MBC." 

Thank You Over and Over Again, Joan Lunden

"As hard as it would be to hear, metastatic cancer is not a death sentence. Survival rates for people with metastatic cancer varies from person to person, but a large study found that 15 percent of women lived at least five years after being diagnosed. Some women may live 10 + years beyond their diagnosis and since these studies were conducted, newer metastatic breast cancer treatments have become available. This leads us to believe that the survival rate for a metastatic patient has improved since these studies last occurred."

Pfizer Has Also Launched an Education Campaign

"FACT: Breast cancer progression can occur regardless of treatment or preventative measures taken – Half of people surveyed said they believe breast cancer progresses because patients either did not take the right treatment or the right preventative measures, signaling the potential stigmatization of people with metastatic disease. In reality, breast cancer can spread quickly and inexplicably, regardless of treatment or preventative measures taken."

Have You Heard? Young People Can Get Breast Cancer, Too. 

Prior to my diagnosis, I didn't realize women my age could even get breast cancer. Sadly, I was sorely mistaken. 

"According to the American Cancer Society, there are an estimated 250,000 breast cancer survivors living in the US who were diagnosed at 40 or younger, with around 13,000 new cases expected annually. While that accounts for less than 6 percent of cases in a given year, studies show that young women are more likely to have aggressive forms of the disease."

People Weigh in On What Breast Cancer Awareness Month Means to Them

Brought to you by the good people at Fred Hutchinson Cancer Research Center in Seattle. 

Finding Clues in Genes of 'Exceptional Responders'

The profile of one woman who beat the cancer odds -- "And The New England Journal of Medicine published her story on Wednesday as a case history in the new genetic era. It concludes with a lesson that may help doctors treat thousands of patients with more common cancers, like breast and bladder cancer, and even find an alternative when a drug stops working."

Increasing Survival Time for Her-2-Negative Metastatic Breast Cancer

"As reported in The Lancet Oncology by Gligorov et al, maintenance capecitabine/bevacizumab improved progression-free survival and overall survival vs bevacizumab alone in the trial."

A New Kind of Awareness

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I'm all for wearing pink if it brings some research dollars in or encourages a young woman who didn't think breast cancer could happen to her to push her doctors for more answers. But yes, yes, yes on the gimmicky and commercial.

"For those of us who advocate for the “cause” – as I see it: the need for more breast cancer research and better care for all affected – a calendar-based theme feels gimmicky and commercial, even manipulative. At best, it’s useful for fundraising. In some parts of the world, including a few U.S. communities where believe-it-or-not stigma about having cancer persists, NBCAM may lead a few women who are hesitant to seek care for breast tumors to go and get it."

That Time I Was on the TODAY Show

When he learned I was going to be on the TODAY show, Chris joked that he was every-so-slightly disappointed that Natalie Morales wouldn't be coming to our house for the interview. I like to think he has a thing for smart brunettes. As always, he is my strongest supporter. I was glad to see he and Quinn got some face time in the segment.

I have been overwhelmed by the outpouring of support from my community -- friends, family, sisters in mets, and people I don't even know have rallied behind me. Thank you guys. I am slowly digging my way through the emails and comments (tough when Quinn pulls my phone out of my hand and yells "No more screen time, mom!"). Touché, kid.

Anyway, here is the segment I did on TODAY. I am encouraged by Joan Lunden's call for more funding for metastatic breast cancer, which is the only way those of us with Stage 4 are going to beat this thing. You can read the accompanying article here.

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As I wrote on the Huffington Post, "When we are loud enough, our voices are heard. Slowly, the conversation about what metastatic breast cancer is and how we're going to address it is beginning, and the face of "awareness" is changing. I am honored and humbled to be a part of that progress."

Not Bald Enough

Last week, I stumbled across this article about Joan Lunden daring to appear bald on the cover of People magazine. How incredible of her, I thought. I wish her the absolute best. She has a rare and aggressive form of breast cancer and certainly has a grueling few months ahead. I applaud her for doing what is right for her and not shying away from the iniquities of this disease.

At the end of the article, it noted that Ms. Lunden would be kicking off Breast Cancer Awareness month (that's October, in case you've been living in a cave) with a special on the TODAY show. Specifically, 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. Email todaypinkpower@gmail.com for more information.

So I did. I emailed todaypinkpower and -- after praising Ms. Lunden for her bravery -- gave a brief snippet of my history, that I was a 32-year-old new mom when I was diagnosed with Stage 4 breast cancer, that I've been bald twice, that I'd love to participate in an empowering moment for women (never mind that men get breast cancer, too).

To my surprise, I heard back pretty quickly. My email from todaypinkpower said, in part: We are looking for survivors or women living with cancer to share in our bold and bald empowering moment. Would you be interested in joining Joan on the TODAY Plaza next Wednesday, October 1? Where are you located? Could you make it to our Rockefeller Center Plaza in New York City? She then asked for more information: my age, location, and phone number. Oh, and could I also send a current photo.

In my crazy head, I started wondering how we could get coverage for Quinn if I was going to the TODAY show NEXT WEEK. What would I wear? Could we afford a plane ticket? Would NBC pay for that? I was getting ahead of myself, I knew, but I was caught up with the idea that a platform as huge as TODAY might start to pay attention to stories like mine. At the very least, I thought the photo might be used in a montage of some sort about women who've "undergone treatment that resulted in hair loss." An "empowering moment," if you will.

So I sent in this photo, from earlier this year. I admitted it wasn't the most recent and made a joke about what a camera hog my 3-year-old is. (He's not.)

And then I got another reply email from todaypinkpower. It said: Thank you so much for your response. We are specifically looking for women who can be bold and bald on the plaza for an empowering moment to support Breast Cancer. (emphasis mine)

My heart sank. I'd been bald twice. That wasn't enough? Had I not been through enough shit to merit the "bold" stamp of approval from TODAY? I wasn't welcome because I wasn't BALD? What. The. Everloving. Fuck. I was saddened and livid and frustrated and then humiliated that I'd gotten my hopes up. I checked the message boards for the online support groups I belong to, and I wasn't the only one.

You see, many, many people with metastatic breast cancer do not lose their hair. For many patients, especially if their tumors are fueled by hormones (which is the majority of breast cancer patients), broad spectrum chemo is a last resort used only after bone-strengthening treatments, anti-hormonal agents, and other targeted treatments stop working. None of those other treatments cause hair loss. Neither do newer, targeted chemotherapies like the one I'm on. A lot of us with Stage 4 have our hair.

That doesn't mean we won't die from this disease unless researchers come up with something better soon. We face our mortality every day, live with side effects that range from mildly annoying to debilitating, and an estimated 40,000 people will die of MBC in the U.S. this year, and yet, metastatic breast cancer gets less than FIVE PERCENT of breast cancer research dollars.

I tried to look at it from a producer's point of view. A sea of bald heads would surely make a far greater impact on television than a group of people wearing pink. And of course, this seemed to be more about ratings than actual support or empowerment or -- God forbid -- education. That didn't make me less upset about it.

Maybe this was about solidarity with Joan Lunden. I tried to put myself in her shoes. How would I have felt if a bunch of women with hair came out to support me while I was bald? Oh, wait. I experienced that. It felt fucking amazing.

Fueled by our frustration and heartache and, yes, fury over the responses we were getting because we weren't BALD, a lot of us wrote todaypinkpower back to explain how gutted we felt by her response, by TODAY's approach to October, by the fact that a lot of women are getting left out of the conversation, by the media perpetuation that you must LOOK sick in order to BE sick. Here we go again and the month hasn't even begun yet.

In what I think counts as a teensy tiny victory, on Friday many of us non-bald "metsters" received follow up emails from todaypinkpower letting us know they would still love to have us join after all, and if we were interested, here were the updated details. We just had to wear our pink.

I get it that this is television. I do. And not everyone wants a segment on metastatic disease with their morning coffee. It's not entertaining. I know that. I live it.

As much as I love New York, I won't be able to make it to the Plaza next Wednesday. But I would fly on the next plane out to NYC if they'd talk about stories like mine for even a minute.

Around the Web

Here's what caught my attention around the web this week.

A paradigm shift.

I'm not sure I could fully adopt this woman's way of thinking, but I do think it's important to examine how we talk about disease. Are we battling? Are we warriors? Or are those of us diagnosed with cancer just doing the best we can with some shitty luck? 

One woman I know talks about shifting our thinking away from "fighting cancer" and more toward "creating health." Now that is an idea I can get behind. What about you? What words do you use to talk about cancer?

Why #BCSM is my favorite hashtag.

Most Monday nights, I'm not able to participate in the Tweet chat sessions accompanied by the #bcsm hashtag. But I still use it as a call signal when I'm feeling at my lowest, or when I have news to share, or when I want to talk to someone who knows exactly what it feels like to be buzzing on steroids at one in the morning. Someone always answers the call. If you haven't checked out the chats, you really, really should.

Joan Lunden has breast cancer.

I wish her the absolute best. I pray chemo is as easy as possible for her. I hope she uses her platform as a celebrity and journalist to shed some light on this disease -- to educate, not just bring "awareness."

A possible new way to fight some breast cancers

"[Researchers] found that women were 4.4 times more likely to have a cancer recurrence during tamoxifen treatment when their main tumor had a high ratio (2:1 or greater) of androgen receptor-positive cells to estrogen receptor-positive cells."

The 3D news that was everywhere this week

When I was first diagnosed, I was asked to volunteer for a 3D mammogram to help further research into whether such tools were beneficial. I don't know if my own 45-minute, highly uncomfortable session added anything to this particular study, but I'd like to think I helped a little. Now if only they could figure out a way to PREVENT or CURE breast cancers, instead of just seeing them.

On that note, some researchers are looking at immunotherapy for treating metastatic breast cancer, thank you and amen.

This: "Unlike maintenance chemotherapy, with its associated cumulative toxicity, a therapeutic vaccine may offer clinical benefit with few adverse effects. The hope and promise is that women with MBC who mount an antibody response to a vaccine may experience significantly longer median survival and a better quality of life."

And, I just realized this article was from 2013, so here's hoping those scientists have made some significant progress since then! I'll see what I can find out for next week's round-up.