BY KATHY LATOUR | OCTOBER 15, 2013
When I received the response to my blog on the Metastatic Breast Cancer Network meeting in Houston, I was, at first, taken aback a little. If you didn't read it, Shirley Mertz, President of the Metastatic Breast Cancer Network,wanted to correct some of my opinions about the meeting. I think she felt my blog was too positive because I pointed out that many women looked well and were getting durable remissions with new treatment.
She was right to call me on it when the median survival rate for those with metastatic breast cancer is 1-2 years and the 5-year survival rate is only 15 percent. I have a hard time when everyone is heralding the progress we have made in breast cancer since approximately 40,000 women are still dying each year of breast cancer -- metastatic breast cancer. That figure isn't much different than the numbers we have been keeping for 40 years. You don't die of breast cancer unless it is metastatic, and we need more research funds given for breast cancer to 1. Keep it from becoming metastatic and 2. Keep it from killing women once it is.
I think I wanted to believe those women were doing better because I don't want to think of women dying of breast cancer; it makes me think of my mom.
October is breast cancer awareness month. It is also the month I was diagnosed in 1986 when my daughter was 13 months old, and it is also the month my mother was diagnosed five years to the week AFTER me.
My mom already had lung mets when she was diagnosed at age 72 in 1991, one of the 5 to 10 percent who are metastatic at diagnosis. She was advanced for a number of reasons. First, her tumor was in a strange place deeply under her breast and close to the chest wall. She had had bad mammography that did not include her chest wall, which it should have. So the tumor was the size of an egg by the time she found it. She also ignored it for a while because she knew she had just had a mammogram and everything was all right. Not until she told me about the lump did I say she had to have it checked out. I immediately called my surgeon and made her an appointment.
When my sister and I arrived at the surgery center where my surgeon had removed the mass, I knew immediately it was malignant. Mom wasn't out in the main area in a recliner drinking juice with a warm blanket over her. She was in one of the private cubbies off to the side. Of course, my sister didn't have a clue why I stopped immediately and began to choke up.
Mom was strangely cheerful when my surgeon was telling her the results of the frozen section pathology, saying that I had had it and I was fine, and I would walk her through this. She named me the executive director of her cancer.
At the next meeting with my surgeon, we went over the pathology report and the results of the scans that had followed. There were shadows in her lungs. It had already metastasized. Mom had no idea what it meant. I did.
The only way to describe the next six months is hell. I took her for her first chemotherapy and got nauseated from the smell. I couldn't go into the infusion area, so my sister went with her. Luckily, the wonderful antiemetics that keep women from the awful nausea and vomiting had hit the market in the five years since my diagnosis, and Mom had no problem going home and making dinner after her treatment. I was on the couch nauseated. She got a good laugh at that.
Mom didn't respond to any of the chemotherapy available at the time, and they all made her feel rotten. When she asked my permission to stop treatment, I told her absolutely. She said she wanted to spend the rest of her time feeling well. It didn't happen because the chemo wiped out her immune system and the cancer galloped. She died on May 22, 1992. She was out of pain and we were all able to say goodbye.
So when someone gives me a hard time about not understanding metastatic breast cancer, get over it. I do. I just don't want to tell you why.
But I do get the frustration around the issue. Only 5 percent of funding goes to metastatic breast cancer.
On October 13, Metastatic Breast Cancer Awareness Day, 15 different non-profits and advocacy groups announced they had joined forces as Metastatic Breast Cancer Alliance to change the way metastatic breast cancer is understood and to increase focus on research.
The Alliance, which also includes pharma representatives Celegene, Genentech and Pfizer, will initially conduct an analysis to identify gaps, duplication of research and to gain a consensus on how to move forward.
I am with you all the way. For my mom.
My mom and my daughter Kirtley six months before my diagnosis.RELATED POSTS