I have a confession to make. Before I was diagnosed with metastatic breast cancer, I would hear that someone in my community had died from breast cancer and I would think: “It’s too bad they didn’t get annual mammograms. It’s too bad they ignored early detection practices. It’s too bad they died, but it’s really their own fault.”
I was diagnosed in 1992 with early stage cancer–stage 0 or DCIS–the earliest you can have. I had a simple mastectomy, which was considered a 100% cure, and breast reconstruction. I continued on with my life, without worrying too much about breast cancer. I never embraced the pink survivor label because I never felt I had gone through that much–no chemo, no radiation, just some disfiguring surgery followed by a saline implant, which was supposed to simulate a real breast.
I continued for 17 years with annual mammograms, 17 years of breast self exams, 17 years of annual checkups and then I was diagnosed with advanced breast cancer with metastases to the bone–stage IV–treatable but no longer curable. I was no longer the poster girl for early detection, because this time early detection had failed me.
Like many in our pink-drenched communities, I had accepted the message that early detection was the cure and that mammograms were a failproof screening test. My education in breast cancer began the day I was diagnosed with mets and I learned that mammograms are a good tool, but less effective when the woman is young and premenopausal; less effective for women with denser breast tissue; less effective at identifying aggressive cancers; susceptible to many false positives (identifying suspicious areas which turn out to be cysts or other normal anomalies); and unable to predict whether the cancers that are identified will go on to be deadly or will proceed in an indolent and unthreatening growth cycle, better left alone.
The message promoted by many breast cancer organizations is one of positivity, survivorship and fighting and winning. So the actual capabilities of a screening tool have been exaggerated and early detection has become synonymous with “the cure”.
When life throws us some crisis, most people like to see it as a challenge and find meaning in their travails. We are by nature optimists, so if you lose your job, you will find another and maybe a better one or in a different field than you had worked previously and never would have explored without the rude shove out the door. The same happens with disease. Testimonials abound from some that they are better people than they would have been without the heart attack, the cancer, the terrible car accident. They realized their life had the wrong priorities, that they weren’t appreciating every single day. And people do change. They meditate, they volunteer, they mend bad relationships. While I acknowledge that can happen, I never want to characterize cancer as a gift. I don’t think I need to endure treatments and side effects the rest of my life just to be a better person.
But I’d like to believe that I have stage IV metastatic breast cancer for a reason: to speak out about it, to educate people, to fill in the missing gaps in the breast cancer awareness messages, to dispel the “guilt” myth, that this cancer is my own fault, that I failed to eat right, think positively, live well.
October 13 is Metastatic Breast Cancer Awareness Day–one day in Pinktober that Metastatic Breast Cancer Network lobbied Congress for in 2009. One day to talk about the ugliness and deadliness of breast cancer, but also the promise and hope of 155,000 or more living with the disease in the US, struggling to live every day well, waiting for the next treatment to extend our lives a few months longer, hoping for a cure to finally stop metastases from occurring.
I have a confession to make. I have metastatic breast cancer and 40,000 women and men dying every year from breast cancer is unacceptable. It’s too bad that the breast cancer message has been skewed. It’s too bad that few know that an estimated 25-30% of survivors will become metastatic. It’s too bad that there is not enough money going to co-ordinated, effective research on metastases.
It’s not too early to start thinking about October. I’ll be writing letters, lobbying the media, working to get the message out. What will you be doing?