More than a pink ribbon

File photo.

More than a pink ribbon

Story By: LIZ FINNEGAN
11/5/2015


ISLIP TOWN—Since the month that has become known as “Pinktober” is now over, the pink flags, balloons and special events to promote breast cancer awareness will slowly begin to recede. However, awareness to breast cancer never diminishes for those who have the disease, and that’s especially true for the men and women who are living with metastatic breast cancer. There’s more to their struggle than just what’s represented by a pink ribbon.

Metastatic breast cancer occurs when cancer cells travel by way of the lymphatic system from a site of origin to other parts of the body and into major organs, such as the bone, brain and lungs. Once the disease reaches this point, which is referred to as Stage 4 cancer, it becomes more difficult to treat and is often fatal. Although there are numerous charities dedicated to funding breast cancer research and drawing awareness to preventing the disease, only about 2 to 7 percent of those funds are dedicated to research for metastatic breast cancer, which results in 90 percent of all deaths from breast cancer. 

There are several not-for-profit organizations that are working to provide more funding for the research these patients so desperately need. One of them, METAvivor, was founded in 2009 when there were no other organizations dedicated to funding research for Stage 4 breast cancer. Since that time, this totally volunteer-driven organization has funded $1.8 million to 26 grants for research.

METAvivor spokesperson Kelly Lange said that 100 percent of all donations to this organization is directed to research, which is chosen through grant applications every year.

“There are still [over] 40,000 deaths a year due to metastatic breast cancer, and that number hasn’t changed in decades,” Lange said. “We are funding out-of-the-box ideas, trying to find new breakthroughs,” she added. The kinds of research the organization funds include cellular pathways to inhibit cancer growth and various new drugs. “We’re just looking for clues… on how to stop it. We are open to any ideas with credible science [to back it up].”

The need to find new treatments is apparently becoming more important every day. “Metastatic breast cancer is now on the rise in young women and we don’t know why,” noted Lange, who has been living with it for 13 years. She was first diagnosed with Stage 1 breast cancer in 1995 at age 32. “Early detection is not necessarily protection.”

Colleen Hofmeister of Sayville knows that all too well. At age 44, she was diagnosed with late-stage breast cancer after going for yearly mammograms and sonograms. “It’s not as unusual as one might think. Of all people diagnosed with any stage breast cancer, 30 percent will become late stage,” she said. 

“I did everything right. Now this is a horrible way to live, going through treatment to treatment.” 

 Hofmeister, who has been battling the disease for eight and a half years, said she is often angered by the hype associated with breast cancer awareness month that raises money for organizations with huge paid staff members when such a small percentage of the money raised actually goes to funding research for metastatic breast cancer. “We’re all becoming brainwashed into thinking if we buy something pink it’s going to help breast cancer research,” she said.

However, METAvivor has a ribbon as well. To highlight the uniqueness of this disease, the usual pink ribbon for breast cancer also includes a base of green and teal to represent metastasis. The green band represents the triumph of life over death, and symbolizes renewal, hope and immortality, while teal symbolizes healing and spirituality. 

“I’d like people to understand that we are not winning the war on breast cancer because people are still dying from it,” Hofmeister said. “Pink is not a cure. We need more money for research into metastatic breast cancer because that’s what will kill you.”

For more information about METAvivor, go to the website: www.metavivor.org.