News Release: A Call to Action on Behalf of Women with Below the Belt Cancer

Ribbons for website-7.18.13

We know women’s lives are saved when we look at cancer through a pink lens. How many more could be saved if we included all the colors representing cancers unique to women?

Each year, some 90,000 women are diagnosed with “below the belt” cancers; cervical, ovarian, uterine/endometrial, vaginal and vulvar. They all have a story. But most have no place to tell it.  They are all waging the difficult and very personal battle to live, and many will not find the resources they need. The Foundation for Women’s Cancer is working to change that.

We recently received a letter written by a gynecologic cancer survivor. In it, she calls into question the lack of dialogue and support for women with below the belt cancer. As we move closer to September, Gynecologic Cancer Awareness Month, and November’s National Race to End Women’s Cancer, we are sharing this letter as a call to action. It is our hope that others will join us and step up this conversation, so critical to women’s health.

Baby, You Got the Wrong Color of Cancer
By Tranette Ledford 

tranetteIn May, when news broke of Angelina Jolie’s preventive surgery, it intensified the spotlight on breast cancer.  A few of those rays spilled onto the subject of ovarian cancer.  I’m betting thousands of women took notice of the latter.

Breakthroughs that provide predictive information mean lives will be saved. After all, stealth is cancer’s signature. For most women, however, the experience of cancer begins with diagnosis.  What follows is the shock and awe of medical warfare: surgery, chemo, radiation. The way through is lined with a host of painful and exhausting procedures. But there’s another challenge for women who don’t have breast cancer. They’re not going to get the same support as their counterparts in pink.

There’s a hierarchy of C-diagnoses, and in it, breast cancer reigns. There are shirts and scarves, ribbons and arm bands, awareness days, special events and races across the country. As there should be. But women with gynecologic cancer often find themselves on the sidelines, benchwarmers in a terrible game, cheering on the heroes but largely unrecognized.

Don’t get me wrong. I run for the pink and champion the cause. I now count four brave and beautiful friends in various stages of recovery. I’m grateful for all the resources available to them; support groups designed specifically for their needs, access to information about treatment complications and options for discounted medical services. Their illness is studied more and funded most. They’re getting the best. And they deserve it. As do women with women’s cancer.

During recovery, my friends with breast cancer tried hard to include me in the various resources to which they turned.  But we found a vacuum between us. We learned about financial support for the uninsured.  I’m grateful I didn’t need it, as it was only available for breast cancer survivors.  We went to survivor exercise classes, free for breast cancer survivors and also designed for upper body recovery. We went to a nutrition class, but learned it did not address the dietary needs of women who’ve undergone pelvic area radiation therapy. Finally, one of my friends turned to me and said, “Baby, you got the wrong color of cancer.”

At the time, I laughed. But increasingly, I saw it as a dangerous truth. Take the issue of Lymphedema, a disorder acquired by damage to the lymphatic system. Cancer treatment is the largest single cause of this condition. Most breast cancer patients are warned about it. But women with women’s cancer too often learn about it only after they acquire it. Like me, they had no information and thus, took no precautions. Why is this dialogue missing?

 Absolutely nothing should be taken away from the pink — but we need to broaden the palette. If we’ve learned anything from the focus on breast cancer it is this: When we look at cancer through rose colored glasses, we save thousands of lives. We might save thousands more if we look through a stained glass window swirling with all the colors representing women’s cancer. That would be a beautiful and inclusive picture of sisterhood. It would yield more resources for women desperate for assistance. More support. More doctors and radiologists better informing their patients.  And the sounds coming from that picture? Lots and lots of dialogue – the most critical ingredient for inspiring change.

If we truly want to support healthy women as a course of action, we need to support all women with cancer, no matter the color. 

Spotlight

This special section in Self Magazine features a GYN surgeon and 34-year-old (at the time of diagnosis) patient.

Awareness

This year’s National Race to End Women’s Cancer aims to spread the word that all women should Love Your Ladyparts! Check out site’s new features and join the MOVEMENT.

Research

The Foundation’s research award winners will be notified in January. Thank you to all who sent in their applications.

Education

The next Gynecologic Cancer Survivors Course will be February 7-8 in Anchorage, Alaska. For more information on educational events and courses, click here.