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Sharing Your Metastatic Breast Cancer Story: Some Practical Tips

I’m proud to serve as a mentor to Living Beyond Breast Cancer’s Hear My Voice Program. (You can learn more about this advocate training initiative here.) I recently spoke with one of the participants about getting her story out in local and national media. I told her I would share some tips gleaned as a 2016-2017 Ford Model of Courage. Here are my notes:

 

What Reporters Need

  • News: New information that is timely and relevant to their audience
  • Context: What does it mean?
  • Direct, clear answers
  • Quotes or sound bites
  • Perspectives and insights
  • Human interest angles

Bonus Tip: Very few reporters have a clear understanding of metastatic breast cancer. You can always volunteer to send some background information, such as MBCN’s 13 Facts About Metastatic Breast Cancer.

(Here is a PDF you can download: http://blog.mbcnetwork.org/wp-content/uploads/2016/10/13_Facts_about_Metastatic_Breast_Cancer2014-1.pdf )

Imagine you were asked to give a speech–how would you ask the speaker to introduce you? You may want to provide the reporter with a brief bio–you don’t have to list every doctor’s appointment/procedure just the facts–you can always include a link to a blog or other article you’ve been featured in.

If it is a local outlet, you might want to mention your community ties: I grew up in Anytown and have two kids at Anytown Middle School where my husband helps coach the basketball team.

If sending an email, don’t forget to include your phone number.

 

 

Interview Dos & Don’ts

DO: 

  • Tell your personal story
  • Know your message
  • Make it a conversation/dialogue
  • Anticipate difficult questions
  • Give clear direct answers
  • Keep it simple
  • Be friendly and responsive
  • Maintain eye contact (if on camera)

Bonus Tip: Stage IV breast cancer poses a challenge–especially for video interviews.  You may find yourself portrayed as “one foot on a banana peel and one foot in the grave” even if you are doing very well.

It can be helpful to acknowledge what was said and reiterate your message: “It’s true that Stage IV breast cancer is incurable–but I am very fortunate to being doing well on my current treatment. FOR NOW, I am doing well and speaking up for my less fortunate friends.”

You may also find yourself portrayed as “cured,” especially if you say something like “I have no evidence of disease.” You might want to uses a qualifier and provide some additional context: “I have no evidence of disease FOR NOW…the reality is I am in treatment for life and my disease will come back–we just don’t know when. Living with that uncertainty is really hard. FOR NOW, I am doing well and that’s why I wanted to share my message, to tell people how they can support people living with Stage IV breast cancer…”

 

DON’TS:

  • Don’t use jargon, acronyms or medical speak
  • Don’t speculate, guess or answer questions on topics outside your expertise
  • Don’t argue
  • Don’t repeat the negative
  • Don’t over answer
  • Don’t comment on rumors
  • Don’t say “no comment”

Bonus Tip: Learn how to describe your cancer in simple terms. Estrogren-receptor positive will confuse many. Consider saying something like, “As is common, estrogen fueled my cancer’s growth–so that’s what my treatment is targeting. Because I will always be on treatment, I won’t have IV chemo until some of the more gentle options have been tried and stopped working.” Or “I have an aggressive type of breast cancer that accounts for about 20 percent of all breast cancer cases. Although some patients with other types of breast cancers can take a daily pill,that’s not an option for me–chemotherapy is the mainstay of my treatment.”

 

Preparing to Tell Your Story

  • Research your audience; understand the reporter’s beat and the outlet’s focus
  • Take time to reflect your story flow
  • Revisit your key messages
  • Build your story framework or “arc”
  • Practice

Bonus Tip: We’ve all seen Miss America interviewed…imagine that was you.What is your platform, the ONE thing you want people to know about MBC? It might be the need for research, the importance of clinical trials or simply to let others know that they are not alone, that there are sources of help.

Have a beginning: (“I was diagnosed”), a middle (“I was afraid and alone”) and an end (“I found support and now I want to be a source of support, too”).

Principles of Storytelling

  • Keep it short–2 to 3 minutes is good
  • Make it easy to understand
  • Bring in the unexpected, the unique angle
  • Tailor it to the audience

Bonus Tip: Do you have local angle? I live in Chicago–many people know that Maggie Daley, our former mayor’s wife, died from breast cancer.This can be an effective example: “Like Maggie Daley, I have metastatic breast cancer that has spread to my bones. Mrs. Daley lived with MBC for seven years and was able to keep an active schedule for most of that time…”

Start with a WOW

  • History: “In 2011, some important new drugs came on the market…
  • Statistic: “We lose 40,000 US people to MBC annually…”
  • Quote: “My doctor said ‘Remember you are a statistic of one…'”
  • Question: “Did you know breast cancer can come back years after someone finishes their treatment?”

Bonus Tip: For me, the WOW is often something like: “No one dies from early stage breast cancer. When cancer spreads beyond the breast to a distant site like bone, liver, lungs or brain, it is then incurable.”

 

End with Something Memorable

  • Reiterate core messages
  • Call for action or desired outcome
  • Compelling ending

Bonus Tip: This is pretty self-explanatory.

One final thought: If you are doing a print interview, ask if you can see it before it is published. Stress that you are only interested in ensuring accuracy–you won’t be be re-writing the piece. The best surprise is no surprise!

—-Katherine O’Brien, August 2017