“As they say, there are seven days in the week, and ‘someday’ isn’t one of them”
I recently ran across this expression while reading an article on the habits of ‘Happy People.’ It made me think about how we often discuss ‘someday’ in the breast cancer community. I’ve said it many times myslef, “I’d like to see a cure… ‘someday.'” or “Someday” there will be a trial for a magic cancer pill.” Or even “I’m going to advocate for cancer research… ‘someday.'”
Well, today is as good a ‘someday’ as any other. Let’s talk about what we can do as metaplastic patients TODAY. I’ve been thinking about actionable goals and ways your everyday average patient can get the ball rolling in the right direction. Here are my thoughts. I’d like to hear yours as well.
1.)Improving pathological reporting for metaplastic breast cancer – After a very fruitful discussion with a pathologist from The College of American Pathologists, I discovered the World Health Organization had created a definitive classification system for metaplastic breast cancer tumors in 2011. However, all of my pathology reports were post 2011 and each was different in the depth of reporting and specific description of my tumors.
I’ve long felt that there is no reasonable way to target metaplastic breast cancer on whole, if we don’t have a better system for identifying these tumors in the first place. How can you target something you can’t consistently describe? With the WHO classifications in place the questions is “How can we improve the reporting level of metaplastic breast cancer tumors?” Again, researchers must be able to find us in order to study us. In many ways our pathology reports are the first line for identifying who is and is not a metapalstic breast cancer patient. If our reports do not accurately describe our tumors then it makes it even more difficult for our doctors to recommend the right treatments, for patients to qualify for trials and for researchers to find us now or our files for retrospective studies.
With the advent of targeted therapies and personalized treatments, it will be even more important for our pathology reports to include ALL relevant information. And, the best part is, we are not alone in this. With new treatments aimed at specific tumor profiles, people with all kinds of cancer will benefit from better reporting and more detailed information included in their pathology reports.
As a patient advocate, this feels like a task we can take on. Let’s start by talking to our own doctors about our pathology reports. Let’s challenge reports that don’t offer us enough information or reports that don’t use the current WHO classification language. Let’s talk to important groups like the “College of American Pathologists.” This feels like something we can do.
2.) Increasing awareness of metaplastic breast cancer. This feels like a task we can each take on. Becoming involved in our local breast cancer communities, sharing our stories in support groups and online. Does your hospital have a mentoring program for newly diagnosed women? Can you volunteer to help other breast cancer patients in your area? Are there opportunities for you to speak to other civic organizations or at conferences or hospital gatherings? Lets all look for opportunities to share our story with others and bring metaplastic breast cancer into the conversation.
3.) Donate directly to the metaplastic breast cancer community. There are two excellent choices right now. One, you can donate directly to Dr. Stacy Moulder’s DAT trial at MD Anderson in Houston or two, you can donate to the Elizabeth Smider Foundation. The Elizabeth Smider Foundation was founded by Dr. Vaughn Smider a researcher who has dedicated his life to working on metaplastic breast cancer after losing his wife to this disease. Dr. Smider is in the midst of creating a tissue bank for MpBC tumors at Sloan Kettering and creating a trial system that will allow women to participate in MpBC trials from different locations, making it easy for more women to be able to afford to participate.
It would be easy for us each just to give a few dollars of our own but we could also hold bake sales, or garage sales. We could sell crafts or trade some skill for a donation, like shooting family photos for a friend in exchange for a donation, offering to babysit in exchange for a donation. Whatever you chose, you could earn a few extra dollars to share with Dr. Moulder and Dr. Smider. Find out how to donate to these groups here.
Let’s not put off today any longer. Let’s not wait for someday for one second more. Let’s spend today helping ensure we all have lots of tomorrows. Who’s in?