Everyone gets a cold or the flu during a Minnesota winter, so I didn’t think anything of my cough at the time. After I realized I had been coughing for several weeks and couldn’t walk up a flight of stairs without having to stop and catch my breath, I knew something was wrong. My doctor wanted to rule out pneumonia, so he ordered an x-ray and a CT scan. I hadn’t even left the office when he called and started saying things like “numerous nodules”, “fluid around your lungs”, and, “a mass in your right breast”. On April 1, 2011, I was given a diagnosis of stage IV invasive ductal carcinoma metastatic breast cancer. What? I was thirty-seven years old, had no family history of breast cancer, never smoked a day in my life, I exercised and ate healthy, had recently been to my gynecologist for a full exam…how could I have a Stage IV diagnosis? Wasn’t breast cancer something that happened to older women?
I think there are certain fears that go through every woman’s mind when she is diagnosed, regardless of what stage, but being thirty-seven with a seven year old daughter and a Stage IV diagnosis seemed to multiply those fears. I spent days crying over all the things I was going to miss with my daughter and husband: birthdays, her high school graduation, her wedding, holding my sure-to-be-perfect grandchildren, our 25th wedding anniversary and maybe even our 30th, and all the trips and home improvement projects that my husband and I had put off until “later”.
I started my treatment as part of a phase III clinical trial, and ended up in the control group, so I had weekly Taxol and Herceptin infusions for eight months. During this time, I started to do a lot of research about metastatic breast cancer in young women and came across the Army of Women. I immediately fell in love with this way of reaching out to women and giving them the chance to make a real difference in breast cancer research.
I have participated in two Army of Women studies. The first was a simple online survey that took 10-15 minutes to complete. The second, which resonated strongly with me, is the “Breast Cancer Risk in Young Women” study. The purpose of this study is to learn what genetic factors may play a role in the development of breast cancer in young women. The Army of Women and researchers at Washington University School of Medicine are still recruiting women for this study and are in need of women who were diagnosed with invasive breast cancer when they were 40 years old or younger for this study.
While a little more involved than an online questionnaire, the “Breast Cancer Risk in Young Women” study was also very easy to participate in. After a quick online survey to ensure I met all the criteria, I was mailed a packet containing everything my oncologist and I would need. The study provided a vial for the small blood sample they needed, and a list of the oncology records they needed. Since I had an appointment with my oncologist coming up, I just took the packet with me the next time I went inso I didn’t even have to make a special appointment. The nurse added the study’s vial to the other ones she was drawing that day, made copies of my medical records, and sent everything off to Washington University via pre-paid FedEx, so there was no cost to me or my oncologist. After receiving my sample, they made one follow up phone call asking about family history that took about 20 minutes. That was it- so simple!
What I like most about the Army of Women is that they allow women to be directly and immediately involved in current research. You may not know exactly where the money from a “pink purchase” is going, or what it is supporting, but with the Army of Women, you know who is conducting the study and what they’re doing with your information. The only way we’ll see advances in prevention, diagnosis, and treatment is if women are willing to stand up and be an active research partner.
Every day I think about the time I have left with my family and of all of the experiences I will not be here for. I participate in Army of Women research opportunities so that maybe other women won’t have to think about those things in the future. My participation in these studies is the lasting gift I give my daughter.
Army of Women member