BY Kristie L. Kahl
While many know Susan G. Komen for its pink ribbon, it is this symbol that also connects the Greater New York City area through its hospitals, community groups and patient navigators to help address disparities among women with breast cancer
recently spoke with Linda Tantawi, CEO of Susan G. Komen Greater New York City
, about the underserved areas the organization looks to help educate about breast cancer, and how various programs have been initiated to combat misconceptions in a variety of patient populations.
CURE®: To start, can you tell us a little bit about yourself and your work with Susan G. Komen?
I am Linda Tantawi, I am the CEO of Susan G. Komen. I just had my sixth anniversary with Komen. I was brought in to bring Komen into the new world of social media, communications and marketing.
When I came to Komen, I could see that, despite our large name and large footprint, there really was a lot to be done in the digital space.
We are the pink ribbon that runs around throughout the greater New York City area, connecting hospitals and other advocacy organizations as well as the community groups on the ground who are doing the work.
Part of Komen’s mission is helping individuals to understand breast cancer. What are some misconceptions about the disease?
Misconceptions start at the very beginning where women think because they have no family history of breast cancer that they are not at risk of breast cancer. My sister was one of those women. Shortly after I started at Susan G. Komen, I asked my sister, who was 43 at the time, when the last time was that she had a mammogram, and she said, “I’ve never had a mammogram.” And I said, “I can’t be the CEO of Susan G. Komen if you haven’t had a mammogram. Go get your mammogram.” She went and got her mammogram and was diagnosed with breast cancer. It’s a common misconception. In fact, most women who are diagnosed with breast cancer – 80 percent – have no family history of breast cancer.
Komen also focuses on “some of the most ethnically, financially, and geographically diverse communities in America.” Can you expand on some of the unique breast cancer risks in these populations?
Our grants process is very competitive and the process ensures that the programs are serving the populations that we know are most at need. We conduct our annual community needs assessment every five years. Through our community needs assessment, we can identify the populations that are most at risk and then target the programs that we think could meet those needs, and then if they can submit a qualified grant, then we will fund them. The community needs assessment also pointed out that the metastatic community had needs, and then our patient navigation program was designed to ensure that women are getting the care that they need.
How has Komen NYC helped to raise awareness surrounding metastatic disease?
A metastatic patient might look quite well. That doesn’t mean that their joints don’t hurt, or that their fingers and toes aren’t tingling, or their nails are in the process of falling off, or they are nauseas or have diarrhea.
In the metastatic community they call it scan, treat, repeat. So, women who are metastatic will always be in treatment. So, for someone to say, “You can beat this.” There really is no beating. They’ll always be in treatment for the rest of their lives. Some women are lucky to respond very well to treatment and they’ll be (no evidence of disease), but that’s not everyone. We know it is a constant battle against tumors returning. But there are so many new treatments, and there a lot of reasons to be hopeful.
There still is a lot of work to be done because 42,000 women a year are dying from this disease. Susan G. Komen funds a brilliant research portfolio with a large proportion of that research portfolio geared toward metastatic disease because we need to figure out why the disease is recurring. Can we at some point stop that recurrence? And if there is a recurrence, how can we shrink those tumors to extend life? The metastatic patients aren’t looking for weeks or months, they’re looking for years, especially patients who are young in their 30s. We just encourage women to take care of yourselves, take care of your families, live your best life and at some point will have significant progress.
Another population many don’t often hear about is men. How does the organization help these individuals?
Male breast cancer is very rare. The biggest problem with male breast cancer is the stigma attached to it. Men think, “I don’t have breasts.” So, it tends to be diagnosed at a very late stage because it is ignored for so long. We encourage men just as we encourage women to know your body and be aware of changes. And if there are changes, you should consult your doctor.