Below you will find tonight's topic questions as well as sample answers. You may find a transcript here. Please scroll to the end of the post for Resources.
T1a: What does the term "survivor" mean to you? Do you use it?
- I usually say "cancer patients and caregivers." People out of treatment and/or in remission don't seem to mind being called pts
- I like survivor if it means that you are survivor from the moment you're 1st diagnosed. A lot of surveys say survivor but mean NDP
- Somedays I feel like a survivor, somedays a thriver, somedays a fighter, somedays just overwhelmed. So personal & so dependent.
- I don't like the survivor label much. Avoid it when I can, but do use it sometimes due to lack of better word
- My son's vocabulary quiz "To survive is to remain alive, even after great difficulties"
- I think that the term survivor can be overwhelming for some patients - can make them feel like a failure if they recur
- That's the term I always use. It has such a wide definition it seems to encompass all my patients.
T1b: What terms other than "survivor" do you use - for yourself or others?
- On good days... "bad ass" *grin* RT
@gyncsm: T1b: What terms other than "survivor" do you use - for yourself or others?#gyncsm - Cancer Experienced - I could go for that
- some use thriver
- Survivor replaced the victim language. So it is MUCH better than that!
- There is always "person". We are so much more than cancer "survivors"
- I say I'm living with cancer. I want to educate people about chronic cancer. Also I'm a lover not a fighter by nature
T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation?
- I loathe the war metaphors.
- As a marketer / former nonprofit person I purposely avoid war/battle. Though fundraisers will tell you those get the money.
- Hearing it said someone lost her battle to cancer, is like fingernails on a chalkboard to me. Hate that.
- The war analogies work for some - to "fire them up" - but for many it can feel like a failure if you frame it as a WIN/LOSE
- War metaphors, we picture ourselves standing shoulder to shoulder. Survivor image is Robinson Crusoe or someone in a lifeboat.
- it especially saddens me that the war language makes hospice or even palliative care "giving up"
T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?
- going with Cancer Experience again
- I think journey can be good because it gives the idea of a beginning and an end - not win or lose
- I never use journey
- It has been a journey for me – with bumps and detours and flat tires and a great appreciation for things - the amazing views
- both cancer Journey and cancer Experience seem to honor individual differences
- a trek? maybe it needs its own term - isn't there a special term for those who climb Mt. Everest?
- I say my cancer journey, experience or mostly my life with cancer (I think that started the 3rd time I got sick).
- There definitely needs to be a verbal space for those who are living with metastatic disease, with cancer as a chronic illness.
- I love (& hate) this tension between need for individual words vs. research needing consistent labels
T4: What cancer terms or labels do you have a negative reaction to and why?
- Victim, sufferer, lost the battle - anything that makes the person in the situation sound downtrodden
- The lost her/his battle to cancer. One of my top cancer language pet peeves. Insulting (IMO)
- Battlefield analogies. Victim. Man I hate those
- I try to avoid saying "your" cancer to a patient, instead say "the" cancer when talking about disease status
- I cringe at Victim.
- I am also a big hater of the words Prevent and Prevention. What we can do is reduce risk. Risk reduction
- the lost/battle thing is more obvious when you think about calling someone a Loser
- And don't get me started on the cancer is a gift thing
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?
- Just deeper understanding in general. Many terms are very superficial or show misunderstanding.
- when someone dies, just say it. Died from colon cancer. or whatever. Truth telling. Plain & simple
- Could cancer groups be more proactive w/ media to start changing way we speak about cancer? AFSP very active w/ media & suicide
- Take cue from person with cancer. Use words she/he seems to like. Ask if certain words make them uncomfortable
- Media - be responsible when reporting celebrity cancer news - whether deaths, remission, risk-reduction. Take some time.
- Cancer groups - Think twice about battle terms and be sure you aren't excluding those who may need you most
- few journalists specialize in medical reporting- if interviews are not quoted, risk to misinterpret information
- Understanding how someone finds strength from life-threatening challenges provides insight on empathethic language
- I loathe the "silver bullet" language - cancer is so many different diseases. One success does not equal a cure for all
Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at
https://www.smartpatients.com/gyncsm .
We look forward to see you next month on Wednesday , November 9, 2016 as we chat about Your Health Care Team Members.
Dee Sparacio
Co-founder #gyncsm
RESOURCES
Andrew McDonald: The war of words about cancer - BMJ http://blogs.bmj.com/bmj/2016/08/10/andrew-mcdonald-the-war-of-words-about-cancer/
Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog http://www.drbrianstork.com/blog/words-matter/
Susan Gubar: Coming to Terms - NYT http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?smid=pl-share&_r=2
Susan Gubar: Not a Cancer Survivor - NYT http://well.blogs.nytimes.com/2012/09/06/not-a-cancer-survivor/
Nancy Stordahl: Nine Cancer Language Traps - Nancy's Point blog http://nancyspoint.com/nine-cancer-language-traps/
Jen Sotham: The Language of Helping a Loved One With Cancer - Cure http://www.curetoday.com/community/jen-sotham/2016/08/the-language-of-helping-a-loved-one-with-cancer?p=1
Dee Sparacio: The Words I Use - WomenofTeal blog http://womenofteal.blogspot.com/2014/11/the-words-we-use.html
Blog | Why I Don't Like the Phrase Cancer Survivor http://www.cfah.org/blog/2013/why-i-dont-like-the-phrase-cancer-survivor
Blog | I did not fight cancer http://www.blogher.com/i-did-not-fight-cancer
Via @HeartSisters | Fighting, battling, and beating: combat metaphors in medicine are just wrong https://myheartsisters.org/2015/11/29/fighting-battling-and-beating-disease-combat-metaphors-in-medicine-are-just-wrong/?utm_source=twitterfeed&utm_medium=twitter
Blog | War as a Metaphor for Cancer http://uofmhealthblogs.org/cancer/living-with-cancer-2/war-as-a-metaphor-for-cancer/23951/
Article | The Language of Cancer: War Metaphors http://www.cancertodaymag.org/SUmmer2015/Pages/The-Language-of-Cancer-War-Metaphors-David-J.-Hauser.aspx
Prevention vs. Risk Reduction vs. Screening. http://coffeemommy-at-work.blogspot.com/2013/12/prevention-vs-risk-reduction-vs.html
NPR | Why the Cancer is Gone Discourse Doesn't Help Cancer Patients http://www.npr.org/sections/13.7/2015/12/07/458824962/why-cancer-is-gone-discourse-doesn-t-help-cancer-patients
7 words and more you shouldn't use in medical news http://www.healthnewsreview.org/toolkit/tips-for-understanding-studies/7-words-and-more-you-shouldnt-use-in-medical-news/
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