You probably all know that I’m a little weary of breast cancer awareness in general. We are past the days of Betty Ford when the words “breast cancer” were spoken only in a whisper. People know what breast cancer is. I think a lot of people know that because of early detection and improved treatment regimens, the outlook for women facing breast cancer is no where as grim as it once was. It turns out, though, that all the pink and all the survivors have perhaps done the breast cancer community a bit of a disservice. When you know far more women living after breast cancer than those whose lives have been claimed by it, it’s easy to think that it’s not such a big deal. It’s easy to think it’s not so deadly.
And yet, there are nearly 150,000 women (and a few men, too) living right now with metastatic breast cancer. They are in the never ending cycle of scan, treat, repeat. That’s right, they will be undergoing breast cancer treatment for the rest of their lives. Lives that will likely be cut tragically short by breast cancer. While only 6-10% of women present with advanced (metastatic) breast cancer, nearly 30% will likely have a recurrence, putting them into that dreaded metastatic category. Treatment advances since the 1970s have increased the median survival time for a woman with a metastatic breast cancer diagnosis to three years, which, while not great, is at least trending in the right direction.
There are a few groups that are focused on advocating the needs and research agenda of metastatic breast cancer patients. Monday, October 13, was Metastatic Breast Cancer Awareness Day. The Metastatic Breast Cancer Alliance, made up of twenty-nine breast cancer organizations, released a comprehensive report on the landscape of metastatic breast cancer, focusing on issues like research allocation, patient quality of life, support for metastatic patients, proper epidemiology (currently, data are not collected when a patient has a recurrence, so it is unknown the exact number of patients living with metastatic breast cancer), and public awareness about metastatic breast cancer. (It’s a pretty heavy read, but the Executive Summary is a little more manageable.)
Instead of reiterating all that is in their summary, I thought I’d share with you a few things I learned this week. I came across a tweet from Pfizer which had the staggering results of a survey they conducted:
I was shocked to see that 72% of people think that advanced breast cancer (by definition, that’s stage IV or metastatic disease) could be cured, and that half of those surveyed thought that it was basically a woman’s own fault if she ended up with metastatic disease. For the record, once breast cancer is considered advanced, it’s not curable. Current treatments aim to control quality of life issues, and are considered successful if the cancer doesn’t get any worse. Maintenance without progression is the goal. While many women can live years in this “maintenance without progression” zone, they will likely die as a result of their metastatic breast cancer. In addition, those who progress to stage IV disease, sometimes within a few months of the cessation of treatment, sometimes more than ten years later, are not responsible for their progression. Many of that 30% had tumors that were caught early and treated aggressively. Figuring out who will progress and why is a huge deal– a very present research need that some are beginning to address.
The other thing that I learned probably has a little something to do with those statistics. Hopping on and off twitter on Monday, I saw a lot coming from the metastatic community. Tweets, blog posts, chats. My overwhelming impression was that many of these ladies feel isolated and marginalized by all the “pinkness” of October. They feel like they don’t fit in with all the messages of hope, knowing that they face the reality they will not “conquer” their disease. They have an understandable urgency for mets-focused research, and many find awareness for awareness’ sake just plain offensive. They’re not so much interested in all those #SaveSecondBase, #TouchYourTaTas, or #NoBraDay campaigns. They want people to understand that metastatic breast cancer claims nearly 40,000 lives every year, and more research money needs to find a way to stop it.
I was touched by the passion of these women to educate and advocate, knowing that their lives will be cut short by breast cancer. Again, this seems like a time when a little selfishness is in order. Yet they argue with passion for research money that will doubtfully be able to save their lives. They write, chat, and speak in public in between chemo appointments or based on the schedule of when they’ll be feeling their “best.” Surely they deserve our utmost respect during a month that many women who’ve been through breast cancer, either in active treatment or with no evidence of disease, find so very difficult.