What It’s Like Being an ‘Exception’ During Breast Cancer Awareness Month

Progressive multiple sclerosis (MS) consumes my world these days, but every October I am reminded about cancer. Eleven years ago, I was undergoing treatment for breast cancer. Five years ago, I was told I had a metastatic nodule in my lung. Talk about a life changing moment.

Technically, I am supposed to be a chronic cancer patient. Somehow though, I don’t fall into that category. About the time I was diagnosed with MS four years ago, I had surgery to remove the cancerous nodule. Since the surgery I have had no evidence of cancer. Other than removing my ovaries, taking a daily aromatase inhibitor to lower estrogen and changing my diet, I am not and have never had treatment for metastatic breast cancer (MBC).

Since my diagnosis of MS, my condition has quickly progressed and has made cancer an afterthought most of the time. But every few months when I have my next scan, especially when the pink ribbons come out, I am reminded about that ‘other big thing’ I am supposed to worry about. I kind of feel “cheated” that MS takes away from the fact I should be celebrating not having cancer. Being diagnosed with MBC is a big deal.

As when any topic peaks my interest in the moment, I start to research. Am I really an exception to the common prognosis of MBC? Are there other women like me who are living without cancer even though they are supposed to be a cancer patient forever? So I Googled long-term survivors and MBC survivors with no evidence of disease (NED). I found some things that made me worry. I kept Googling of course, and eventually I realized I wasn’t going to find evidence of other patients like me.

MBC is not given a lot of attention. Most people think about the pink ribbon and the people who have won their battle with breast cancer, or the people who have died. Research has slowly started to increase for MBC, but for many years it was the subject of only 7 percent of all breast cancer research.

My research has shown me that there really isn’t a lot of data on long-term metastatic breast cancer patients. There are some stories out there of women who have survived 10, 15 and 20 years. Some of them have passed, some are still battling, but I have not come across anyone who isn’t undergoing continuous medical treatment. With an MBC diagnosis, you are told you will try one drug protocol until it stops working and then switch to another. Eventually, you will run out of options. Fortunately, more options have become available prolonging prognosis for some.

So where does that leave me? Lucky, I guess. I know they may find evidence of cancer again one day, but for now I will just accept that I am an exception. I am thankful I do not have to take cancer drugs.

Not having the worry of MBC allows me to focus on MS, a type of incurable chronic illness. There are treatments that help many MS patients maintain a “normal” life with little or no progression. Unfortunately, I am not one of them. But I am strong and determined. Someday, maybe I can say I am an exception to the rule with MS, but not today.

If that day ever comes, you can bet I’ll be telling my story.