Ever-Growing Army of Survivors Fight Disease, and Stereotypes

Exactly five years ago, I was worrying about a strange lump in my breast and trying to convince myself that it was nothing — after all, I was only 36 and had no history of breast cancer (or any form of cancer, really) in my family. Today, I am a five-year breast cancer survivor, living a life that is in some ways almost unchanged by cancer, and in other ways completely transformed.

I’m part of an ever-growing club. Today, there are more than 12 million cancer survivors in the United States, according to the Centers for Disease Control and Prevention. This means that one out of every 450 people is a cancer survivor. And we’re more organized, more vocal, and more visible than ever before.

If you’re old enough, you might remember former first lady Betty Ford revealing the news of her breast cancer in 1974, which at that time was a huge deal. Around the same time, a woman named Betty Rollin published “First, You Cry,” probably the first major “breast cancer memoir.” Decades ago, sharing the fact that you had any form of cancer was like coming out of the closet — you felt isolated and alone, didn’t know where to go for support, and worried that your friends and family might not understand or be supportive.

Today, having cancer — and being a cancer survivor — is very different. Let’s be clear about one thing: In my view, at least, you’re a cancer survivor from the minute you’re diagnosed, because you have cancer and you’re still alive, right? Cancer survivors include both those who are still in treatment and those who haven’t had to look at a chemo infusion bag or an MRI unit in 20 years.

It’s a brotherhood and sisterhood, and today it’s out of the closet. Cancer survivors have formed a community of their own, advocating for the care and services that we need all along our lifespan — from our number one priority, the treatments that really combat the disease and extend our lives, to the seemingly little but very important things, like better wigs, help with the sexual side effects of treatment, and coping with the omnipresent fear of recurrence.

There are hundreds of support groups, specialized for just about every form of cancer, from the Rare Cancer Alliance (www.rare-cancer.org); to the Young Survival Coalition (www.youngsurvival.org) for young women with breast or ovarian cancer; to Fertile Hope (www.fertilehope.org) for cancer survivors concerned about having a family. There are also all those ubiquitous yellow bracelets from Lance Armstrong’s Livestrong Foundation.

And then there are the online blogs — hundreds of cancer survivor and advocacy blogs, including “Chemo Rocks!!,” “The Stupid Cancer Blog,” and Kris Carr’s “Crazy Sexy Blog.” There’s even a blog-hosting service just for cancer survivors, “Blog for a Cure,” which currently has more than a thousand members, each writing individual blogs about everything from acute lymphocytic leukemia to urinary bladder cancer.

Back when Betty Rollin and Betty Ford were diagnosed, people with cancer were expected to die soon. And much more often than today, we did. Even when we didn’t, we were often treated like fragile china dolls who couldn’t handle vigorous exercise or challenging work. Doctors would often talk to the spouse of a person with cancer, rather than directly to the patient — especially if that patient was a woman — thinking she needed to be protected from the devastating news, or couldn’t understand the complexity of her diagnosis.

There’s still some of that today, unfortunately, but it’s going by the wayside — largely because we cancer survivors won’t put up with it anymore. We’re speaking out and demanding that cancer doctors, researchers and foundations focus on our needs, not what they think we need.

In November 2008, breast cancer survivors Emily Abel and Saskia Subramanian published “After the Cure: The Untold Stories of Breast Cancer Survivors,” a groundbreaking book focusing on the life-altering, long-term post-treatment body changes and side effects that are often ignored by a culture that prefers celebratory pink-ribbon breast cancer stories.

And angered by the relative lack of attention paid to people under 40 with cancer, a group of young cancer survivors has created “I’m Too Young For This!” (www.imtooyoungforthis.org), a site for young adults helping other young adults with cancer. The group’s Young Adult Leadership Council represents “a generation that has been lost in a gap and ignored by the system; a generation that is pissed off; a generation that does not benefit from the efforts (support, research, early detection and prevention) of the big box cancer organizations who are saving lives for boomers and seniors but not for us,” according to the site. To combat the problem, their “stupid cancer” merchandise raises money for the Stupid Cancer Fund, which supports research into young adult cancers.

Clearly, these are not your great-grandma’s cancer survivors. Today’s cancer survivors are a force to be reckoned with. If you’ve been diagnosed with cancer recently, this is an army of fellow warriors waiting for you to join their ranks. Get online or get on the phone, find the network you need, and get ready for the fight of your life.

About the Author

Gina Shaw is the medical writer for The Washington Diplomat.