I’ve been contacting medical professionals, networking within the breast cancer community and generally advocating for MpBC patients whenever possible for at least the past year.
The one thing I haven’t been doing is discussing these activities in the MpBC facebook group I help to moderate. Some people may wonder why I don’t talk openly in my own group about all my activities? There are a few reasons I’d like to share and then I’d like to share some of the advocacy work I have been doing.
The number one reason I don’t talk much about the advocacy in the group is because the group is not “all about me.” Plainly speaking I don’t really want the focus on me. I’m uncomfortable with others thanking me. I feel arrogant speaking about myself and I don’t want others in the group to think I know something they don’t know. We are all in this together and as such, we are all equal partners in the group. It’s not about me, it’s about us. So, I see my advocacy as something personal.
With the announcement of the MpBC study done by Dr. Joyce O’Shaughnessy of Baylor University, I believe it is clear we are making progress in the medical community. The Director of Public Affairs for Caris Life Sciences contacted me directly asking me if we would help them spread the word about this new study. I think that is proof of our success and want to share some insight into the progress that has been made so far.
I’ve been juggling a number of projects related to MpBC and I’d like to share with everyone what I have been doing.
- Building our website www.metaplasticbc.com. The website is dedicated to providing accurate and easy to understand information about metaplstic breast cancer. It is a repository for medically accurate information and a place to find the most recent studies of interest for women with MpBC. Most of you know about the Q&A sessions with medical professionals. These have given me an opportunity to speak directly with doctors who are interested in metaplastic breast cancer. Some of the contacts I have made while conducting the Q&A’s have been very helpful in getting me connected to other doctors who are willing to listen to our collective story.
- Spreading the word through other websites. I’ve reached out and partnered with a number of websites to help spread the word about MpBC. Recently, I had a Google hangout with Dr. Jay Harness, past President of The American Society of Breast Surgeons and the medical director for Breast Cancer Answers.
- We have a Facebook page, a Google+ page and a YouTube channel. I update these pages with information about the studies we discuss in our group. The YouTube channel has videos about my personal MpBC story. I would love to have others tell their story as well and put them on the site. I only used myself as a starting point for the channel.
- I am a mentor for a local hospital program called SOS (Survivors Offering Support). I am the go-to mentor for women with MpBC and also offer support to other women with TNBC in my community.
- I have applied for and been accepted as a DOD Consumer Reviewer. The DOD is the main funding source for many breast cancer studies in the US. Consumer Reviewers sit on panels with medical professionals and review the proposals from researchers looking for funding.
- Working with the College of American Pathologists (CAP) I have submitted a proposal for their consideration. The proposal outlines the need for new guidelines for MpBC pathology reports. The proposal will be taken into consideration during their June meeting.
- Again working with CAP I will be doing an audio-cast directed at pathologists. In this program I will outline the need for consistent and detailed descriptions and reporting of metaplastic tumors. I will be working on the audio-cast in the next few weeks.
- I recently attended the REV Forum 2014 an event sponsored by LiveStrong, Genentech and The American Society of Clinical Oncologists (ASCO). I was able to meet many of the top thinkers in the cancer care/support/advocacy communities. I explained many of our issues and advocated for more support for our community.
- While at REV2014 I met with a company that may be in the position to connect our community to the research community very soon. I am working on building that relationship now.
- And, finally, I have created the Metaplastic Breast Cancer Foundation. The purpose of the foundation is not to collect money, the Elizabeth Smider Foundation is already a worthy charity dedicated to MpBC research. The purpose of the foundation is to raise awareness, connect to the medical community, get researchers working on metaplastic breast cancer issues and make a difference for all of us affected by this disease.
So, that is what I have been up to for the past year. We are a strong group and I am thrilled for the support we can offer and the many women involved but having the biggest metaplastic facebook group is not the goal. The goal is to do something real for our community. What do I mean by real? I mean something that will change outcomes for women with MpBC. Something that will make a difference in our prognosis.
I believe there are many women in the group that can help towards that goal. I encourage everyone with the time and inclination to advocate for MpBC in any way they can. Go to conferences, mentor other patients, raise money for the Elizabeth Smider Foundation or to support Dr. Moulders’ trial, knit hats, write blogs, talk to your doctors, offer to speak to the local support groups. Whatever you can do, I encourage you to do it. Let’s do something real.