Have you ever been asked to share the personal story about your diagnosis of breast cancer? I have plenty of times and do not mind doing it but … I always want to know why and what the purpose of telling it is. Industry leaders pay attention! Please do not tell a story of a survivor to tug at the heart strings or grab the attention of the audience. It happens and I feel strongly about speaking up about the ethical responsibility of the breast cancer story.
Breast cancer survivors often feel they have been sucked into a drama in life they did not want to be a part of. It feels like going to a bad movie you want to get up and walk out of even when you paid the money to get in. There are emotions, many tangled emotions involving more than just the survivor. Well meaning and supportive family and friends get sucked into the vortex of a breast cancer diagnosis from a caregiver perspective. All of these individuals must be taken good care of if they are going to share their breast cancer story.
A Word of Advice to Industry Leaders
We are vulnerable individuals. Remember that above all else. Breast cancer survivors use and think about words like recurrence, death, chemotherapy, radiation, surgery, recovery. When you ask a breast cancer survivor to tell their story, ask them first how they feel about it and in the same breath tell them the purpose of the ask. Let them pause when they need to or stop and abort the project all together respecting the personal toll it can take telling their own narrative.
Let me give you an example from my own experiences.
- Asking me to share my story to improve patient outcomes. Purpose!
- I can help other patients who come after me to improve their results.
- Requests have been made to talk about tools or devices used to maximize success of surgery or treatment for other patients. Education!
- When patients have access to this kind of information it gives them health information to discuss at their consult. Health literacy improves with these kinds of shared stories.
Ethical Responsibility: Trust and Transparency
There are occasions when I am approached by industry to share my story and it feels tantamount to commercializing for profit. It feels like, “Oh geez we’ve got a good hero story here that will draw some good revenue.” I politely walked away but this was a skill I learned after falling prey to what seemed like a big story and ultimately was nothing more than a marketed way of exploiting what some take advantage of, the dramatic side of breast cancer for company profit.
Do not think of us as expert survivors, thrivers, or heroes. Breast cancer patients are experts. We are experts at the lived experience. We can tell you how it feels good to connect with others in our community and what value there is in that kind of support. A survivor can also tell you how a hospital experience might be improved, or a surgical garment might be more comfortable, and perhaps be innovative enough to come up with an organization or business themselves that improve the experience for other patients. That is an expert.
Trust us and be transparent with us about how you can help so we can support our fellow breast cancer family. Tell us our story is going to help improve care, support communities, generate revenue for research for a prevention, care, or improving quality of life. Remember, some of our stories become legacies. We do not all live long enough to see the full impact of sharing our stories. Ask yourselves, will this story continue to positively enact change and impact the lives of breast cancer patients? If so, you have come to understand the ethical responsibility of the breast cancer story.