Sunday, April 12, 2015

What can you do to help metastatic breast cancer patients?

I do not have any answers for the questions that I will pose below, but I have fingers that can type and a heart that can feel. I am working with a group of genomics researchers right now on a metastatic breast cancer project and fervently believe that this research WILL make a huge difference in our understanding of metastatic breast cancer, and that new ways of treating this disease will be developed as a result of this research, and that people with metastatic breast cancer will benefit from all of our efforts. I know that research must be done if the statistics that haven’t changed for the past ~ 30 years are ever going to shift in the direction of living longer with metastatic disease. And if we, as researchers, ever want to be equipped with the data to back up claims of cures, then we MUST focus on understanding metastatic disease on a level that is fathoms deeper than what we understand now. It will take time, dedication, and a whole bunch of smart people (patients + doctors + researchers + advocates together).  But, that first requirement is something that many people simply do not have, which makes this an untenable situation.

I just spent some time at the Living Beyond Breast Cancer Conference in Philadelphia in order to meet patients and advocates. I went to listen and to learn. And what I saw was fierce conviction in the eyes of metastatic patients. And what I heard was the voices of people who are facing their mortality and demanding not only that others do more, but that others help THEM do more. I heard that same sentiment take multiple forms. And although I have no answers, I can at the very least let anyone who opens this blog know that there is an immediate need. Right this second. If you are someone with answers, perhaps you can spread your thoughts all over social media so that your voice and your ideas can be heard. 

Everyone recognized that research must be funded (groups like METAvivor are 100% dedicated to funding research that squarely focuses on metastatic breast cancer research). There was no doubt in anyone’s mind that we need to focus on research, the patients get it, we researchers get it, the advocacy groups get it. Completely. But what was striking to me was that in addition to funding, there is a need to figure out what else can patients do about the now. The right now that’s full of patients who want to live and who can not wait for the research that will yield results sometime down the road.  What can they do in the right this second that’s chocked full of metastatic breast cancer patients who look around in a room full of other patients and advocates and researchers and drug manufacturers and say, “What about me?”,   “What about me right now living with this disease?”, “Surely there is something that I can do to help!”, “I'd like a how to guide for how to advocate, I don't want to die, at least not yet”, “I come to conferences, but I want to do more”, “What can we do from our desks... the cause is not dying, and not dying soon”.

As I focus on the obvious ways to try and make a difference, the research, I would love love love to hear from people that can help with the questions that I clearly can not answer. I will work on the science, and I will do everything I can to build awareness so that people outside of the metastatic community can gain a better understanding. I will ask for help from complete strangers who might have answers (like you, if you happened across this blog on social media for example), or at least directions to pursue so that the truly hard questions can be heard by as many people as possible. It’s Sunday morning at 10:26, and soon I’ll be putting my scientist hat back on to try and understand what is happening on a molecular level with respect to metastatic breast cancer. But right this second the only thing I can think of to try and help is  to ask the same questions I just heard to you. Do you have any answers?


  1. I couldn't attend the conference in Philly, but friends were there and one has tweeted your post, that's how I found you. While we tweet, and we facebook, and we blog out our MBC reality, I keep wondering... other than those who face the same prognosis, those who love us, those who get it, who is listening?

    You are, and I wanted to thank you, most sincerely...

    1. Thank you Carolyn, your words mean very much to me

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