When I was first diagnosed with stage IV metastatic breast cancer (MBC) in 2015, my husband and I had many, many questions for my new medical oncologist, Dr. K. At the top of the list was “how long can I expect to live with this disease?” I found that was an easier question to write down than it was to actually ask. Fortunately, Tim asked it for me.
And it was clearly a question Dr. K has had to grapple with on a regular basis. His explanation of the basics of how MBC works was well practiced; his answer to the life expectancy question was something to the effect of “we don’t know for certain, but here’s what the research says” He explained what the statistics are, how every person is different, and how every MBC has its own unique characteristics. On the positive side, HER2+ cancers, like mine, have a number of treatment options so if the first one fails, there are other options you can follow up with. On the negative side, HER2+ cancers were more likely to spread to the brain than other types, decreasing survival rates in those patients. We had been trying to process and put a face to this new horror in our lives. But we learned that there isn’t a single face of stage IV MBC.
One phrase I hear frequently in the MBC community is “no one has an expiration date.” I agree in the sense that I know I am not a carton of milk (although I look at myself and see I’ve turned chunky and somewhat sour since my diagnosis).
But while this phrase is usually meant to encourage metastatic patients to not give up – to try that next treatment or find a new doctor or stop worrying about statistics and focus on living life – I now find myself rolling my eyes up in exasperation when I hear or read it. I’m the sort of person that plans ahead and thrives on clarity, not wishy-washy platitudes. Right now I want to know, within reason, how much time I have left on this earth. And if I exceed that expectation, more power to me.
When I had the crainiotomy back in May, Tim took our neurosurgeon, Dr. Chiang, aside and asked her what she thought about our planned trip to London in July. She said “go ahead and have a good time!” That was the answer we wanted to hear. Then he asked her if she thought I’d still be okay (translation: alive) for Cas and Jasper’s graduations next year. She wasn’t as enthusiastic about that possibility.
I was 20 feet away in my room, head covered in gauze, so I wasn’t a part of the conversation, but Tim told me a few days later that Dr. Chiang felt 6 months to a year was a reasonable expectation for me to still be on this earth. Of course, that doesn’t fit into my plans. I want at least a year to see my “babies” cross those stages and get their hard-earned diplomas. I know that the doctor doesn’t have a crystal ball and is just making an educated guess, but it did rock my world a bit to hear that answer. It’s also, strangely, given me a renewed sense of purpose. My goals haven’t changed, so I’ll just have to do what I can to make sure the medical timeline aligns with the goals.