This month we came together to discuss Cancer Myths. Twenty-six participants joined us for this important discussion. You may find analytics here and a transcript here.
Here is a sample of the responses to our topic questions.
T1: For you, what makes something a cancer myth? Is it strictly false information or is it something more?
- I see the term "cancer myth" as a widely held belief about cancer. It could be true, false, misleading or anywhere along the spectrum. For me, it is a vague idea that I haven't really looked into the facts of
- I think of it as misinformation that for whatever reason has persisted through time.
- Sometimes people make generalizations ('cancer myths') about cancer, cancer treatments or cancer outcomes - but every cancer is different and every patient has an individual experience.
- I think of cancer myths as outdated information or false beliefs that people have regarding cancer.
- It may also be an assumption about the disease, or its treatments, that are taken for granted based up conventional wisdom, rather than evidence. When passed down by attendings to trainees, we called it #oncolore in my residency
T2: What are some cancer myths that you grew up with? What are some you have encountered as you've been impacted by cancer or worked with cancer patients? (re: causes/what happens during treatment/about emerging treatments/other)
- Thinking back on my dad's cancer, I remember people talking about this idea that once you have surgery and expose it to air, you've allowed the cancer to spread and the end comes more quickly
- People thinking there is a cure for cancer and it’s being hidden from us, sigh 😣🙄. Cancer isn’t one disease. People don’t realize it’s many diseases.
- “Cancer is a death sentence”, “Sugar fuels cancer”, “You are too young for cancer”, to name a few.
- I think “cancer = death sentence” is a belief/response that can be important to unpack and surround w/the individual facts at hand. Some cancers do have little progress - others certainly not as much as we would like - but there are ways to provide hope along w/info
- A cancer myth I still occasionally hear is "you can only inherit female cancer risks from mom" ... We all inherit DNA from both mom and dad, hereditary cancer risks included! Both sides of family health history are important #gyncsm #FamilyHealthHistory #GeneticsMyths
- Growing up - The myth that only old people got cancer. Most recently - The myth that my HPV cancer was directly my fault. #gyncsm
T3: What are some cancer myths that come up around nutrition/diet? Why do you think there is so much conflicting information in this area?
- the top myth to me is - People who have cancer shouldn't eat sugar, since sugar makes cancer to grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. Giving more sugar to cancer cells doesn't make them grow faster.
- And artificial sugars too. So no sweets for anyone lol. #gyncsm
- I think people want to believe that you have some control over whether you get cancer so thinking that if you eat healthy, limit sugar, and exercise, you will be safe which is not always true
- Agree - The risk of focusing on areas we can "control" is the inevitable opposite, that when something out of our control happens, there is shame/blame... Feels similar to fad diets and other trends that seem to just make people feel bad about their bodies
- Maybe not a myth, but there is a lack of basic female anatomy knowledge and also many do think the pap covers “everything down there” vs mainly cervical cancer.
- In the #sarcoma world, some women assume a PAP smear will catch their cancer. Not necessarily.
- There are absolutely myths to GYN cancers. One is that cervical cancer is the “easy” cancer, that it is just bad cells from a Pap test when in reality it is much, much more involved.
- that the Gardasil vaccine will cause fertility issues or other catastrophic problems.
T5: What are some tips for handling cancer myths and responding (or not) when you encounter them - both in-person and online?
- Tell people to fact check and look for information that is factual and not hearsay. As frustrating as it is at times, some people just can’t hear you.
- I try to educate in a calm manner to dispel the belief. Can be quite difficult with some people though. It’s important to remember you may not change their mind about some things and to stay composed
- Very situational - have to adapt to the person and setting. First step I find helpful is active listening and clarifying where the perspective/myth comes from.
- will ask the person to share the research that backs their statement. Then I share a reliable source or journal article that dispels the myth.
- I often give people studies or quote experts. But I try to be diplomatic, unless I think the person is making money or hurting people with myths.
- Dispelling myths can take a lot of time and energy. And it is okay to not always be up for that. When we can interact one on one and ask questions IF they are open to a discussion that is where to start.
- Meet people where they’re at - sometimes that’s really hard. Sometimes they are not taught what we already know. Clarify and ask questions to understand. Have a conversation. Share your story and some reliable resources for them to check out.
- There is a ton of attention and research in health communication and combatting misinformation with ~everything~ going on...I look to experts in that space for ideas and approaches to build trust and communicate evidence clearly
- I get an alert from Pubmed on new research for #leiomyosarcoma, including gyn LMS. I read experts online & attend #sarcoma conferences when I can afford them.
T6: What are your go-to sources for reliable information about cancer? For gynecologic cancers specifically?
- Resource | @theNCI is an important source of information and has this article addressing common cancer myths: https://www.cancer.gov/about-cancer/causes-prevention/risk/myths
- Resource | @cancerdotnet is doctor-approved cancer information from @ASCO, designed for patients
- Resource | National Comprehensive Cancer Network ( @NCCN ) has patient versions of screening and treatment guidelines for many specific cancers
- For GYN Cancer, see the #gyncsm blog Resources page http://gyncsm.blogspot.com/p/resources_9.html and a good starting place is the Foundation for Women’s Cancer https://www.foundationforwomenscancer.org/
- @ocrahope (OCRA)
- @MDAndersonNews (MD Anderson)
- @sloan_kettering (Memorial Sloan Kettering Cancer Center)
- @SGO_org (SGO)
- @GYNCancer (Foundation for Womens Cancer)
- @IamCervivor ( I Am Cervivor)
- Peer support - in person and online can be VITAL to fill in information gaps BUT you have to be careful and use these other sources and your doctor to verify information. I steer to groups like @smart_patients which have clear moderation vs. [unmoderated] FB groups.
We look forward to you joining us at the next #gyncsm chat on Wednesday, September 8, 2021 at 8pm ET when we’ll discuss Genetic Testing and Gyn Cancers.
We’ll also be asking our participants to fill out a survey to help us improve the #gyncsm community.
See you in September for Gyn Cancer Awareness Month!
Dee and Christina
