I found out I had metastatic breast cancer 19 years after the first time I had breast cancer.
I was initially diagnosed when I was 45. I thought, “How could I have breast cancer at this age?”
They put me on very aggressive chemotherapy and radiation. I was out of work for 10 months. It really knocked me for a loop, but it gave me those 19 years, which is a long time. I was fortunate in that way.
You don’t ever forget about the cancer, but I kind of put it in the back of my mind. Later, I thought, “I should have known,” because I was so exhausted all the time, taking 3-hour naps. That was my major complaint the first time with the breast cancer. I guess I was in denial at that point.
In 2013, I saw three different doctors who told me, “If it hasn’t come back by now, it’s not going to come back.” Unfortunately, they were wrong.
I had to insist that they do a bone scan. And, sure enough, I had widespread bone metastases, as well as lesions in my lung.
There were times recently during treatment when I was feeling really bad. I had such poor quality of life. I can’t say I’m totally healthy now, but with my current combination, this is the best I’ve been. I get by every day through my faith, and I just hope and pray that it works for a while.
These drugs don’t work forever. I’m already on my sixth protocol.
Most people think breast cancer is curable. For some people it is and for some people it’s not. I’ve heard from some researchers that it’s just too hard to address metastatic disease, so they’re not even looking at it.
There’s a lot going on to get us counted, because if we don’t have the right statistics you’re not going to allocate, the right amount of research funding. We believe the actual numbers of people with metastatic breast cancer are much higher than people think.
I just want to feel good because I want to continue doing patient advocacy work. I’m as active as I can be in the metastatic community. It’s so important because a lot of women can’t get out of bed. Those of us that can need to have our voices heard.
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