My mom died 30 years ago and I still miss her. Things have changed a lot in Mundelein, IL, but unfortunately metastatic breast cancer outcomes really haven’t. It’s still like it was in 1983: incurable. Most people know about early stage breast cancer–metastatic breast cancer is a lot different. Treatment never ends. I’ve been living with it since 2009. Here’s our story. I hope it will bring a new awareness to October.
My mother was diagnosed with inflammatory breast cancer (IBC) in 1981. IBC accounts for between 1 to 5 percent of all U.S. breast cancer cases–NIH classifies it as a rare disease. Although some small progress has been made since my mother died almost 30 years ago, it remains the most aggressive type of breast cancer.
For those who might be wondering: I don’t have IBC, I have run-of-the-mill ER/PR+ HER2 NEU- breast cancer with a low volume of bone mets. My cancer is not considered hereditary–I am NOT a carrier for the BRCA mutation.
I was 15 when my mother was diagnosed with IBC. Unlike other breast cancers, IBC typically does not present with a lump. The breast often looks swollen or red, a change that sometimes can happen overnight.
My mother’s treatment began with a mastectomy in our community hospital. In hindsight, I don’t know why my mother didn’t go to a university hospital–I can’t believe her small town surgeon would have seen many cases of IBC or even garden variety breast cancer for that matter. My parents went to the Mayo Clinic for a consultation. No one in our family had cancer. We didn’t know anyone with cancer. If you had a serious health crisis, everyone knew the Mayo Clinic was THE place to go.
From the community hospital, my mother went on to Lake Forest Hospital for in-patient chemotherapy. My older siblings were away at college leaving only my father two brothers and me to visit my mother in Lake Forest.
I hated going to visit my mother there. The nurse’s station had stern notices warning visitors against sitting on vacant beds. As we walked down the hall we would sometimes hear retching or terrible groans emanating from other patients’ rooms.
Our travels also took us to Lutheran General and Northwestern. I can’t remember where my mom had radiation–maybe at Lutheran General.
My father went to some of my mom’s appointments, especially if she were trying something new or meeting a new doctor. But most of the time my mother, who didn’t drive, asked which ever child was with her to remain in the waiting room while she saw the doctor.
Oncology regimens have improved dramatically since the early 1980s. In my recollection, my mom’s treatments were on par with Civil War battlefield amputations. I think she had a radical mastectomy–which is no longer done. Today’s anti-emetics didn’t exist–my mom would throw up for days when she was having chemo. Later, when she had radiation, her skin was broken and oozing and her back–either because it was burned or itching or both–was a constant torment.
In the early 1980s, breast cancer was not daytime television fodder. “Mastectomy” was not a topic Merv Griffin, Mike Douglas, Phil Donahue or Judge Wapner broached. But in the early 1980s, it seems we had a perfect storm of launch vehicles for breast cancer awareness: Susan G. Komen for the Cure was founded (1982); Lifetime TV went on the air (also in 1982); and Oprah made her nationwide debut (1986).
Now it is 2013. Thirty years ago, I had just graduated from high school and seen my mom die from metastatic breast cancer. Now I have it. But this really isn’t about me–it’s about making a difference for other people.
October 13 is National Metastatic Breast Cancer Awareness Day. On that day, I hope you will remember our story.