Each time October rolls around I feel conflicted. The Breast Cancer Awareness Month message of prevention and early detection is a beautiful dream. I wish it had come true for me. But it did not. Early detection failed me– at 38, I was too young for a mammogram. Even the breast surgeon couldn’t feel the lump I detected while nursing my son. My prevention included no tobacco, alcohol, caffeine, soda pop or red meat. I worked out 5 days a week. Later I’d learn the BRCA2 genetic mutation I carried meant no amount of prevention could possibly fix my mutant status.
After stage III breast cancer diagnosis and treatment I was pronounced cured. But then cancer metastasized, to my bones. Now it is incurable. For the rest of my life I’ll be on chemo and other treatments. Only a small fraction of people, even in the breast cancer community, understand that metastatic breast cancer a.k.a Stage IV is incurable. Everywhere I go, I must explain that despite no longer having breasts, I still have breast cancer. I explain the basics of metastasis – it happens when the cancer moves from the breast to another organ, typically liver, lung, brain or bones.
Sometimes bitterness threatens the hopeful message which so many people celebrate each October. If October hope is based in truth and action, I can support that. But if it’s based on the belief that those with breast cancer are at fault for missing their mammogram or missing a workout, then they need to be educated.
A few years ago, our local breast cancer conference changed their name from “Breast Cancer Awareness” to “Breast Cancer Education”. Can we all agree that if someone isn’t “aware” of breast cancer, they likely won’t come out from the rock they’ve been living under to get a mammogram? Until breast cancer is cured, it’s education that is required. Education that 30% of those with early stage breast cancer will become metastatic. Education that breast cancer is only deadly when it moves beyond the breast. Education that less than 5% of the funds raised by most organizations go to metastatic breast cancer research.
This October, my hope is to educate others about metastatic breast cancer. Acting on this hope, I’ll give away hundreds of copies of my book, Camp Chemo: Postcards Home from Metastatic Breast Cancer to those touched by cancer. I’ll tell my story to educate others about MBC. Each reading, signing and speaking engagement will raise awareness of metastatic breast cancer, and funds for research.
My hope is that you will continue to tell your story and educate others, not just in October, but every month of the year.
By Camille Scheel
Camille Scheel is author of “Camp Chemo: Postcards Home from Metastatic Breast Cancer” a real-time chronicle of her stage III breast cancer diagnosis at age 38 and later, living with metastatic breast cancer. She lives with her husband, daughter, son, cat and dog in Minnesota. More at www.CampChemo.com.