Know Stage IV: Practical Tips for Metastatic Breast Cancer Advocates

September 18, 2017

For LBBC’s Know Stage IV campaign, on Sept. 18, members of LBBC’s 2017 class of Hear My Voice Outreach Volunteers have written about what they want other to know about metastatic breast cancer. Learn more about Know Stage IV

Katherine O’Brien is a Hear My Voice mentor, a patient advocate, a board member at the Metastatic Breast Cancer Network and co-chair of the Metastatic Breast Cancer Alliance’s public awareness committee. For Know Stage IV, she tells us what she's learned during her 8 years of advocacy work.

Eight years ago, I was diagnosed with bone-only stage IV breast cancer. Two years ago, my cancer spread to my liver — I’m currently on my fifth line of treatment.

I have always been a book nerd — information is my coping strategy. But my library had no books about metastatic breast cancer and the brochure my doctor gave me was useless.

I attended an MBC support group held at a local cancer support organization and that’s where I found the Metastatic Breast Cancer Network’s publications. Reading MBCN’s “Diagnosis MBC” brochure  was my gateway to patient advocacy. I later attended MBCN’s national conference, at which Shirley Mertz and the other MBCN members shared the stage with some of the nation’s most prominent oncologists. These advocates were so authoritative and committed to making things better for their fellow patients. I wanted to be like them.

Advocacy, not unlike the disease itself, can be a bit of roller coaster — with some incredible highs and lows. Most of the people who inspired my advocacy have died. Losing friends is hard — sometimes I do have to step back for a bit.

But it is rewarding when I see tangible evidence we are making a difference. In 2010, there was exactly one article about our cause published on October 13, National Metastatic Awareness Day. Last year there were at least 60. Earlier this year, we worked with LBBC and the Metastatic Breast Cancer Alliance to create a petition calling for our national cancer registry to count all people living with MBC and the reception has been amazing.

Here are some things I have learned over the past 8 years:

Take care of yourself first. Before you can effectively advocate for others, you must advocate for yourself. Give yourself time to understand and adapt to your diagnosis and all that it involves. Pace yourself.

Find your own path. I continued to work full-time as a technical writer/editor for 5 years after my diagnosis. At that time, I wasn’t comfortable sharing a lot of cancer talk online — “Who would hire someone with stage IV cancer?” I thought. Each person must find his or her comfort level. As my nephew says, “Not everything has to go on the internet!”

Play to your strengths. Advocacy covers a lot of ground — everything from writing a blog post like this one to sitting on an FDA panel. There are many opportunities to make meaningful contributions: Programs such as LBBC’s “Hear My Voice” offer practical advice and can help you narrow your focus.

Move from “me” to “we.” While there are many treatments for my particular subset of breast cancer, not everyone can say that. I have been fortunate to have done well for a long time with relatively few side effects. When I share my story, I try to be inclusive. I stress that I am just lucky. I can’t take any credit for still being here and it pains me that so many are not.

Never stop learning. I strive to be what advocate Musa Mayer calls an “evidence-based advocate.” Among other things, an evidence-based advocate understands enough of the science involved and its increasing complexity to have a realistic view of both the potentials and drawbacks of new treatments.

Keep an open mind. I may be an ancient lady of 51, but I am never too old to learn something new. I am open to fresh perspectives and divergent opinions.

Is it education or vindication? Anger can be a natural response to an MBC diagnosis. The question is what will you do with that anger? It’s easy to make people feel sorry for you and ashamed of their own ignorance. Channeling anger into change is a lot harder — but infinitely more rewarding.

Be gentle in your grief. Most people know nothing about stage IV breast cancer, and if we are being honest, very few of us did before our own diagnosis. It can be tempting to unload on a cashier pushing pink-ribbon products or a well-meaning friend urging us to “stay strong!” Everyone is dealing with something — be kind. As a wise man once said, “See everything. Overlook a great deal. Improve a little.”

 


Learn the facts. Support the cause. Know Stage IV.

Comments

Great advice, Katherine!

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