This past Sunday, on October 7, 2012, I walked in the annual Susan G. Komen Race for the Cure. This has been a yearly event for me since my original diagnosis in November of 2001. But this year, it felt very different. It was very different.
The pink ribbon culture has exploded over the years. It seems to grow bigger and bigger. During the month of October, you can buy anything and everything in pink. Clothing, candy, accessories, even cars! Many companies use the “pink” theme to promote their campaigns to raise awareness of breast cancer. But since being diagnosed with Stage IV breast cancer, it has hit me that awareness is not really getting us anywhere. It’s 2012 and I am fairly certain that everyone is AWARE of breast cancer. You would have to live on another planet not to be aware of this disease. What we really need to focus on is finding a cause and a cure.
I’ve learned some shocking statistics in the past few weeks. When Susan G. Komen died of breast cancer in 1984, she was one of approximately 40,000 women who lost their lives that year to this cruel disease. Since then, the annual number of deaths from breast cancer remains at approximately 40,000 per year. It doesn’t seem to me that awareness is saving that many lives.
The other statistic that shocked me is that 30% of all women diagnosed with early stage breast cancer (stages 0, 1, and 2) will eventually move on to become Stage IV. Despite the constant message that early detection saves lives, the truth is that this is not the case for all of us. Early detection doesn’t always mean you will be cured. It’s a harsh reality that no one likes to talk about. Who really wants to be told that despite going through disfiguring surgery, chemotherapy that causes sickness and horrible side effects, and even high dose and dangerous radiation, there is still a 30% chance that the cancer will come back? While I understand it, I still think I would have rather been told the truth up front.
Among the many new friends I have made on my discussion boards, there are two women who have shared their desire to go back to the days when they had “pink ribbon” breast cancer. This means that they had been diagnosed, treated, and moved on with life. People would congratulate them on winning their fight, being strong, and conquering the enemy. Then, to their ultimate shock and horror, they were rediagnosed with metastatic breast cancer. This drastically changed the way people regarded them. Suddenly, they were the elephants in the living room. No one wanted to talk about them being Stage IV, as if it were somehow contagious. One woman was even asked to leave her breast cancer support group because her diagnosis caused the rest of the group members anxiety. I guess having us Stage IV gals around is a bit of a downer.
I would really like to see the attitude toward Stage IV breast cancer change. We should be able to talk about it, write about it, even joke about it. We should be included in support groups, because, guess what? We need support more than anyone else. I guarantee that the anxiety this may cause others, is nothing compared to our daily anxiety dealing with the fact that our cancer is terminal.
I truly believe that I have quite a bit of life left in me. I told my oncologist that I wanted another decade. He said I might get even more. So, with whatever time I have left, I hope to put some valuable energy into the crusade to move on from the great awareness campaign. I want to educate others about the disease and about where to put their time, effort, and money in order to make the greatest impact.
I may still walk in the Race for the Cure. I don’t know at this point. The Komen Foundation does a lot of admirable work providing low cost and free breast cancer screenings to low income women. They provide valuable patient resources and support. But currently, my understanding is that only 2% of the funds they receive go toward research for Stage IV breast cancer. I want to see this change in my lifetime. They will be receiving a lot of communications from me in the next few years, guaranteed.
In the meantime, my research has uncovered two admirable organizations that put close to 100% of their donations collected to real research. Metavivor and Stand Up To Cancer both get my seal of approval and will also be getting my money. Both organizations are easily found on the internet if anyone is interested.
I hope my post hasn’t been a “downer,” but in the quest to make REAL progress in this fight, I feel it is my duty to tell it like it is. I’m not sure I’ve been dealing with it long enough to really tell it like it is. But, I can tell you what it isn’t! It isn’t pretty, it isn’t fun, it isn’t easy, and it isn’t pink!