10/18/2011 07:57 pm ET | Updated Dec 18, 2011

40 Years and Still Waiting?

In 1971, President Richard M. Nixon declared a war on cancer by signing into law the National Cancer Act. That was 40 years ago. A little over a decade later the Susan G. Komen Breast Cancer Foundation was established in hopes of speedy research and a cure.

Susan Komen died from Stage IV breast cancer in 1980 at the age of 36. Stage IV refers to invasive breast cancer that has spread beyond the breast. It is also defined as "metastatic," and no cure to date!

October is always a painful and sad reminder for Stage IV breast cancer patients who deal with non-stop grueling and unrelenting treatments day in day out. During the month, the Komen Foundation celebrates "Pink October." It's the foundation's annual fund-raising drive. Among all the pink ribbon runs, cancer walks, labeled hats and shirts, and a whole lot of television and radio commercial advertising, nary a word about Stage IV.

But, there is good news. Through all this "pink haze" Stage IV has finally broken through the color barrier. There is victory for Stage IV breast cancer. Yes, victory my friends. Many of us with this disease have forged ahead despite the lack of support from certain organizations.

Stage IV has a ribbon, too. It's black... black to acknowledge the void left in our hearts due to the deaths of all who have succumbed, those who fought damn hard waiting for a cure for Stage IV. It's time to speak up and make room for Stage IV, time to quit being overshadowed by the "Pinktober" campaign. It's time to speak about our Stage IV brothers and our sisters who are no longer with us, to support their families who are left grieving.

The Stage IV movement began in 2007 and 2008 when the Metastatic Breast Cancer Network (MBCN) along with the Young Survival Coalition (YSC) and New York University Cancer Institute met with Michael Bloomberg, the mayor of New York City. As a result of extensive dialog about Stage IV, the mayor declared Oct. 13 Metastatic Breast Cancer Awareness Day. Mayor Bloomberg passionately believed that an all out effort was needed to focus attention on an under-the-radar breast cancer population, namely Stage IV.

With perseverance and might, other Stage IV sufferers also sought the attention of legislators; 18 more legislators followed Mayor Bloomberg's lead. When it came time for me to get involved, I contacted the mayor of my community, John W. Lewis of Gilbert, Ariz. He also made a proclamation. The movement to educate legislators continues to grow; more are becoming involved.

In 2009, the U.S. Senate passed a resolution 295 designating Oct. 13 National Metastatic Breast Cancer Awareness Day. A month later, the House of Representatives did the same with Resolution 787. Stage IV received its own day of recognition! I don't know of any other cancer group with a day set aside for awareness and observation. I'm proud of all those who fought so tirelessly for it.

Sadly, too many of the women and men who helped cross this mile and get "our day" are no longer with us. We offer them our humble thanks and gratitude along with an assurance that the rest of us will remain vigilant in providing awareness for Stage IV breast cancer.

October is close to ending now, but our dedication continues year round. Many advocates like myself are busy advising TV stations, radio stations and local newspapers about this day. Flyers are being delivered to cancer facilities, spas, salons, thrift shops, restaurants, places of worship and more. It is our hope that people will blog, Twitter, Facebook and use all other types of media to spread the word about those of us living with Stage IV breast cancer. We do not sit back waiting for Oct. 13, we can't; time is not on our side, and we are constant in our efforts. Stage IV conducts local support groups, symposiums, meetings and conferences held all year here and abroad.

Forty years ago Nixon declared war on cancer, but the war is far from over. Why? I have a theory: The cancer community has not banned together like the AIDS community. There is not one united voice demanding a cure for cancer. If cancer groups would just work together for a cure for all cancers, imagine what could be accomplished. We might just find that cure... a cure that might include Stage IV breast cancer. Let's hope.

Please remember Oct. 13 throughout the year. Those of us who suffer with Stage IV breast cancer want others to become aware of our disease. In so doing, we may not have to wait another 40 years before finding a cure.

Until next time,