Over the past few years we have noticed more men and women diagnosed with cancer and their caregivers/loved ones speaking out about the words used to describe their situations. Some people with metastatic disease do not see themselves as survivors while others do. Some who had surgery but no chemo don't call themselves survivors. Some are unhappy when they read that a friend lost their battle, while others consider themselves warriors. We understand that there is no right or wrong term to use, but we feel it is important to share the thoughts and feelings about these words with each other and our health care providers so we can understand each other better.
Our patient community partner, Smart Patients (@Smart_Patients), recently conducted a survey of 1,000 cancer patients on their platform. In response to the question, "How do you feel about the term 'cancer survivor' as a description of someone with cancer?", one third of the respondents chose negative, one third chose neutral, and one third chose positive. We look forward to having Smart Patients join us to share more about what they learned from their diverse community on this subject.
All those diagnosed with cancer, their caregivers, friends and family, as well as their health care providers, are invited to join us on Wednesday October 12, 2016 at 9pm ET to share your thoughts and feelings.
The topic questions are:
T1a: What does the term "survivor" mean to you? Do you use it?
T1b: What terms other than "survivor" do you use - for yourself or others?
T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation?
T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?
T4: What cancer terms or labels do you have a negative reaction to and why?
T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?
To get ready for this chat, we have been gathering viewpoints on the words we use about cancer. We hope you have a moment to read through these essays.
Andrew McDonald: The war of words about cancer - BMJ
Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog
Nancy Stordahl: Nine Cancer Language Traps - Nancy's Point blog
Jen Sotham: The Language of Helping a Loved One With Cancer - Cure
We look forward to this lively discussion. Remember, we are a community that respects each others' choices of how to describe a life that includes a cancer diagnosis.
See you on Wednesday.
Dee and Christina
Co-founders #gyncsm community