Someone asked me once if it felt different when I was first diagnosed with breast cancer from when I was diagnosed with metastatic breast cancer. It did. When I was first diagnosed I felt terrified, but also strong and confident. There were all of these pink images and smiling faces surrounding me and telling me I’d be fine. I believed them. I was uneducated about metastatic breast cancer when I was first diagnosed. After all, I was only stage 1 and had no lymph node involvement. What did I need to know about metastatic breast cancer? In my mind I’d sacrifice a breast, ( but get a boob job in return) lose my hair, which would grow back and then I’d pick up my life and move on. There was a finish line to run towards and I was going to cross that line and be done. Yep, NAIVE.
Looking back I’m not sure what would have helped me. I believed that early detection had saved my life, because that was my reality at the time and I didn’t know better. I’d gotten mammograms every year since I turned 40. In fact, I’d just had an all clear mammogram 3 months before I found the lump. It puzzles me when I think back. I like knowing the facts about things. I’m not comfortable with sugar coating. I want to know what the percentages of success are from one treatment to another and I can live with uncertainty. It’s one of the reasons I chose to have a single mastectomy. There was such a small chance that cancer would recur in my other breast with the treatment options I’d chosen that I knew I could live with the possible false positives that may come up in future imaging tests. I kept hearing if I made it five years without a recurrence I’d be okay. I didn’t know there was a 30% chance I’d develop metastatic breast cancer at any point in the future. I thought women and men who died from breast cancer were dying because they didn’t catch it early. No one said that once you are diagnosed with breast cancer you can never really be sure it won’t come back. Who wants to live with that?
My stage 1 self would have liked to have known all of these facts. I’d want to know what to look for in terms of recurrence. I needed to know that breast cancer can spread to the bones, lungs, liver and brain and be aware of possible symptoms. Not because I like to live in fear, but because knowledge keeps me strong. I would have been shocked to learn the measly amount of pink money that goes towards researching breast cancer metastasis. Cancer kills almost 600,000 Americans every year. Many of those deaths are caused by metastatic cancer, or cancer that has spread to vital organs. We don’t know how or why cancer spreads. Isn’t that crazy? Research into cancer metastasis is not well funded. Everyone looks at prevention, but in doing so we are abandoning the almost 600,000 Americans dying every year from this disease. 40,000 of those deaths are from metastatic breast cancer. My stage 1 self would have felt much safer knowing copious amounts of research was happening to stop the possible spread of my cancer and if I was one of the 30% who developed stage 4 cancer, there would be treatment available which would provide me with a long and high quality of life. Unfortunately, this isn’t happening. Yet. I’m hopeful things are starting to change. The mbc community is lobbying Congress today for more funding for all metastatic cancers. My hope is that by working together we can create meaningful change. Because losing almost 600,000 Americans each year is too many. We can do better.
Want to help? Donate to Metavivor. 100% of your donations go towards funding metastatic breast cancer research. Team Judy also supports mbc research at the Masonic Cancer Center, University of Minnesota. 100% of the funds we raise goes towards mbc research.