October 13, 2011
Nancy Brinker, Founder of Susan G. Komen Foundation.
Dear Mrs. Brinker,
I am writing this letter because I know your motivation in founding the Susan G. Komen Foundation was based in Love. The Foundation has done enormous work in increasing breast cancer awareness so that women are getting screened and checking their breasts on a monthly basis. So many women have been empowered to ask questions.
Now I’d like to request that you push the Foundation forward in a direction that will stop the metastases of breast cancer. I’ve been reading about it because of the awareness that the Foundation started. This is what I have found out…
Dr. Susan Love, one of the most well-known oncologists in the area of breast cancer, says that the staging of breast cancer is outmoded. Whether breast cancer metastasizes to your other organs really has nothing to do with the stage at which it is caught. It has more to do with the biology of cancer cells and their microenvironments. http://cancerculturenow.blogspot.com/2011/05/mbc-needs-you.html
So, no matter what your diagnosed stage, you can (and many, many do) die of breast cancer because of metastases. Less than 5 % of the money going into research actually goes to what is killing mothers, sisters, aunts, grandmothers and daughters—breast cancer metastases. http://ihatebreastcancer.wordpress.com/2011/10/01/metastatic-breast-cancer-awareness-lets-create-some/
As you know, every year, 40,000 women die of metastatic breast cancer. That number has not changed in over 40 years. For 65 percent of those who are diagnosed, breast cancer will be the eventual cause of death. Women are dying of the breast cancer that has spread (metastasized) to other organs: most commonly bone, liver, lung, and brain. You have described the achievements of the Foundation in this way. “When we started, the five-year survival rate (emphasis added) was just 74 percent when breast cancer was diagnosed before it spread beyond the breast. Today, that survival rate is 98 percent. Nearly 75 percent of women over the age of 40 now receive regular mammograms compared to just 30 percent in 1982.”
Unfortunately the numbers that you are using don’t tell the whole story. Horribly, the mortality numbers do. “Mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers. The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives (some DCIS, other slow growing invasive breast cancers, and others that are dormant or regressive); so it looks like survival for early stage breast cancer is 98 percent. Also this is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. For Stage II and III, one-half to two-thirds will develop metastatic disease within five years and they are included in the 5-year survival statistic.” http://www.breastcancerdeadline2020.org/act/deadline-toolkit/ByTheNumbers.html
So if you look at whose dying, we’re no farther along. And I know that is not what you wanted when you started the Foundation.
Added to that is another phenomenon that may be happening. There may be a sort of complacency with the status quo occurring. Instead of those with metastatic cancers having a drug that is designed to prevent metastases, they have a long list of only moderately successful drugs designed to shrink tumors. None of these drugs is a cure and none actually prevents new metastases.
In the world of chemotherapy, the amount of time bought by these drugs is not years, but months. Those who take chemotherapy are doing it in the hope that they will beat the odds. But metastatic breast cancer has a mean average survival of three years.
You sister’s story is a story about metastatic breast cancer. Yes, mistakes were made in her care which should never have been made. The Foundation has brought awareness of what to do if you receive the diagnosis. However Suzy’s experience with breast cancer might have been the same today if her breast cancer cell biology and cell micro environment were right for metastases. Six months after a surgery to preserve her breast (not the best care) she had metastasis to her lungs. She went through treatment after treatment and nine operations but she died 3 years after her initial diagnosis.
You know the ravages of metastatic breast cancer because your sister, Suzy, died of it. And 40,000 women a year die of it.
Would you change the direction of the Foundation so that it pushes the envelope on this horrible fact?
We have to face it. Breast cancers metastasize. They can come back even if you pass the 5 year “cure” mark. What we need to do is not avoid this but boldly and bravely face it.
It seems as though everyone you know has a story to tell about the loss of loved ones to breast cancer. I have one too. I was married at Cape Fear Valley Medical Center so that my mother could be at my wedding. She died in that hospital two weeks later of metastatic breast cancer.
Now that the Foundation that you started has such momentum, please redirect it to finding drugs to stop the metastases. Your dear sister, my wonderful mother, so many other fantastic women are gone. All the women who are dying of this terrible disease need the funds of the Susan G. Komen Foundation to go to this research.
Thank you for all your efforts. I know you have to be tired but will you try to do this? For Suzy? For my mother? For all the sisters, mothers, aunts, cousins, grandmothers, daughters?
From the heart,
Kathleen Hoffman, PhD MSPH
Daughter of Edna Hoffman, MD