Wednesday, November 10, 2021

Nov 10, 2021 Chat - Talking to Family and Friends about Cancer and Cancer Risk

We were so happy that Dr Anne Becker-Schutte was able to join twenty-three participants for this robust conversation about Talking to Family and Friends about Cancer and Cancer Risk. You may find the transcript here and the analytics here
 
Here is a summary of the responses to our topic questions. 

T1: After a diagnosis, telling family and friends can be overwhelming. What are some considerations for deciding what information to share, with whom to share it, and when? What are some tips for those early discussions?

  • I recommend that, whenever possible, a patient facing a new cancer diagnosis have at least one trusted person with them at the first appointment, so they have extra ears & a note-taker. 
  • After you take a moment to breathe and digest the information, I encourage direct communication (phone, video, in person) with your most important support people.
  •  If you are a person who processes well in writing, make some notes and consider using a tool like a social media group or CaringBridge page to distribute general information to a larger group (if you have someone who can be in charge of that job, that can be great). 
  • And with kids, you know them best. Most kids will ask for more information if they can handle more. But don’t try to hide it—kids are perceptive. 
  •  It is likely that you will have some shock. Ideally, you will have at least one key support person who can help you hold space and sort out the “who needs to know what” logistics. If not, there are always professional helpers.
  • Ultimately, it is your decision to share how little or as much as you would like. People generally mean well but may not know how to process the unexpected nature of a cancer diagnosis. It is important to know it's your story to share & no one can take that from you. 
  • A1: follow your heart. Let people know what you are comfortable talking about. Talk with your partner about what you are willing to let others do for you

T2: What are some ways to handle the variety of responses and reactions when sharing about one's cancer diagnosis, treatments, and/or experiences?
  • Everyone processes things differently. It's easy to take things personally, however, their response may have nothing to do w/you. If you find it too difficult w/certain people, limit your interactions/information shared. Talk to a therapist to help with processing too.
  • A sad reality is that some who were very close will react by pulling away from the diagnosed person. This is so hard, but know that this is common and others will often step in and surprise you. 
  • I often talk with clients who are struggling with the reactions of others. Some folks pull away. Some folks say insensitive things. Some folks appear to expect you to solve their discomfort over your diagnosis. 
  • I second the suggestion to remember that others are responding to their own issues, even if it feels like responding to you. During diagnosis and treatment, you need to center your energy on your health and your family. 
  • I love that card about "When life gives you lemons, I will not tell you about my friend that died of lemons". Others often don't know what to say and go in weird and hurtful directions.
  • T2 sometimes it’s easier to talk to strangers in a support group who are going thru or have gone thru your journey
  • Yes! A well-run support group (or a space like #gyncsm) can be a huge support because you have that shared experience.
  • A2: I had to be very clear about my main agenda in contacting family members. It wasn’t for support or validation. I’d just tested + for BRCA2 and getting word out to fam was my overriding concern.
T3: What advice would you offer to friends and family when talking to their loved one about cancer? What have you found MOST helpful? What tends to be NOT helpful at all?
  • The first thing I encourage family and friends to do is to avoid trying to say the exact right thing. 
  • In fact, I think that one of the most connecting, caring things you can say if someone shares a diagnosis is, “I am so sorry to hear that. I don’t know exactly what to say, but I want you to know that I am here.” 
  • I also encourage folks to offer a specific type of help. “I will come over on Tuesdays to take the kids to the park. I will walk your dog. I will be there Thursday to run some laundry.” Asking a person who is in treatment what they need can actually create a burden. 
  • Another suggestion I offer to friends and family is to just say, “Tell me if you need me to be cheerful or to just be with you and share the sadness together.” No feeling needs to be solved. Feelings just need acknowledgment & space. 
  • A3: I sometimes point friends and family members to the “ring theory” of responding to tough situations: Comfort in (towards the person who is ill). Dump (your fear, etc) out—to the rest of your support network.
  • I feel something like "I don't know what to say. This is hard." can go a long way vs. trying to say the perfect thing and making it worse and/or not saying anything because so worried. 
  • T3 listen. Ask if you can do errands or chores. Drive to treatment. Wash their hair! 
  • Support is everything. Please don't listen to respond. Listen to listen and provide advice only when asked. Most of us just need someone to hear us. If you are unable to support us, encourage support groups either virtually or at a local infusion center.
  • Love the asking what they are looking for. Sometimes want to talk cancer. Sometimes want to talk anything but cancer. 
  • t3: Show Up. 
  • T3 NOT helpful. "So do you trust what the doctor is telling you? "or " So what caused the cancer?" ( heck if I knew that I'd get the Nobel Prize.) " Oh that's a bad one my Aunt... Sister..., Neighbor had that ."
  • Listen to listen, not to respond.

T4: Many of us struggle with how to ask for and accept help and support. How can we best communicate what we need to friends and family when feeling overwhelmed?
  • For some of my clients, it helps to have a list of the stuff that needs to be done (housework, kids, doctor visits), and allow people who offer help to just choose from the list.
  • I also remind patients that friends and family members can’t take away the cancer, but often are desperate to do something. Offering a concrete need is actually helping the helper.
  • And sometimes we all need the reminder that accepting help is not a failure. It is part of the human experience. I suspect my aunt may have lived longer if she had been able to rest and accept help.
  • A4: The best advice: keep a journal. Write down anything & everything. If you want to talk to someone, ask for a referral from your provider's office. Sometimes you don't know you need help until you're in the process. Remember, healing is not linear.
  • When people w cancer seek & receive help from others, they often find it easier to cope. When you accept help from your loved ones you are allowing them to feel connected to you during a time that they really need to express how much they care about you 
  • Those who care about you won’t know how to best support you & may say “let me know how I can help”. This is a great opportunity to tell them in specific way what they can do to be helpful. It’s important for you and it’s important for them to allow this to happen 
  • This is so hard to do when you are tired, overwhelmed, brainfogged. It’s good to make a list, like in Google docs or something, and share it 

T5: For genetic testing, what are some considerations when it comes to sharing the results with family? Are there resources for how to reach out and for handling their reactions and questions?

  • A5: My first consideration would be to think about what I hope others would share with me. I want to know if I have elevated genetic risk. It’s why I pay attention to my cardiac health.
  • My aunt called me and then sent a follow-up email with information from her genetic counselor. It was good to have things to look at and research when I was ready after that initial conversation. 
  • genetic testing results have implications for you & your medical care, but also the cancer risk & medical recommendations for relatives ... #HereditaryCancer
  • Every family dynamic is different, so what works in one family might not in another - across the board, we recommend that genetic test results are shared with family members, especially if a gene mutation is detected, as relatives may have inherited higher cancer risks
  • Some families will share genetic test results w/ relatives at gatherings (holidays/reunions), some have phone calls, send information to relatives by letter, or invite relatives to join them in a genetic counseling visit #gyncsm Getting the info out is a huge & important 1st step
  • Resources to help w/ sharing genetic test results are available through orgs like @FacingOurRisk & others. A genetic counselor can also help you think though different strategies & answer questions that you may get from relatives.@GeneticCouns has info & how to find a GC 
  • T5 I made sure to ask first before I shared my results with close family members. Some relatives didn’t want to talk about it. When they were ready we did have the discussion. 
  • Organizations like @FacingOurRisk @CancerDotNet @GeneticCouns have resources for sharing genetic results with relatives.
  • T5. I felt it was so important to share with my family. My doctor helped me with the info to share
  • T5 One other issue that a lot of us faced with genetic testing was being told by family and others that it’s “so good you couldn’t have kids to pass that on.” Goes along with the it’s less sad when we die without kids
  • I discussed outreach strategy with my genetic counselor and a peer navigator at FORCE. I knew that, for myself, receiving a form letter about my genetic test results would have turned me off. I would prefer a more personal, one-on-one approach, so that’s what I used 
T6: What are some tips and resources for guiding end of life discussions and planning with friends and family?
  • I like encouraging folks to explore tools like National Healthcare Decision Day or the toolkit at the Center for Practical Bioethics to begin thinking about how to have these conversations.
  • I remind my clients that their discussions and decisions are ultimately their own. These can be guided by family values, religious/spiritual values, etc. but should ultimately reflect your values. 
  • When I worked as a hospital social worker, we shared resources like Death With Dignity: https://deathwithdignity.org/learn/end-of-life-resources/ 
  • They are tough conversations, which is why I have advocated for folks to have these conversations with loved ones long before there is any diagnosis. It’s a regular discussion at my house.
  • I also remind clients that making clear plans about your desired end of life healthcare decisions, burial/cremation arrangements, ceremony or celebration is a gift to those left behind. (Also, having a central location for key paperwork).
  • It can start when making out an advanced directive and health proxy. Be honest with loved ones about our wishes. As family members, we have to be willing to listen to what our loved one wishes and not place our ideas on how they should be coping.
  • 1/3: talking about end of life can be difficult but having open and honest communication with your family will create emotional connection at a time when it is needed most. It is natural to want to protect your loved one and yourself 
  • 2/3: Some people may feel that talking about end of life communicates giving up. In fact, most couples report that sharing their deepest concerns, especially about end of life, brings them closer together and helps them feel less fear
  • 3/3: It is hard to hide fears related to EOL. Not sharing your thoughts may only add to their concerns & sense of being alone. Being deeply honest w them shows courage & commitment & gives them the opportunity to talk w you in a way that may not possible w anyone else 

We look forward to you joining us at the next #gyncsm chat on Wednesday, December 8th at 8pmET when we’ll discuss "Surviving Holiday Stress"

Wishing all a very Happy Thanksgiving. We are thankful for our moderators, supporters, and all participants. "Thanksgiving is also National Family Health History Day... Speaking of sharing and taking with relatives! #gyncsm" E. Bodnar

Dee


Resources




Friday, November 5, 2021

Talking to Family and Friends about Cancer and Cancer Risk- Nov 10 #gyncsm Chat

 


This month on Wednesday, November 10th, at 8pm ET, #gyncsm is pleased to have our very own health moderator, Dr Ann Becker-Schutte (@DrBeckerSchutte) as our guest to discus Talking to Family and Friends about Cancer and Cancer Risk.  
 
How we talk about our cancer with family and friends may change over time as we progress from newly diagnosed, to being in treatment, to survivorship. Those with a gyn cancer or high-risk diagnosis may respond differently to their loved ones' reactions. With genetic testing recommended for all women with ovarian cancer and endometrial cancer, how we share and discuss those results with loved ones is an important consideration. 
 
We invite you to join us as we discuss the following topics questions:
 

T1: After a diagnosis, telling family and friends can be overwhelming . What are some considerations for deciding what information to share, with whom to share it, and when? What are some tips for those early discussions?


T2: What are some ways to handle the variety of responses and reactions when sharing about one's cancer diagnosis, treatments, and/or experiences?


T3: What advice would you offer to friends and family when talking to their loved one about cancer? What have you found MOST helpful? What tends to be NOT helpful at all?

T4: Many of us struggle with how to ask for and accept help and support. How can we best communicate what we need to friends and family when feeling overwhelmed?


T5: For genetic testing, what are some considerations when it comes to sharing the results with family? Are there resources for how to reach out and for handling their reactions and questions?


T6: What are some tips and resources for guiding end of life discussions and planning with friends and family?

Feel free to check the Cancer.Net website for tips on communicating with your spouse/partner, child, and teen about your cancer. 

Christina and I look forward to having you join us.  


Dee 
#gyncsm Co-moderator




Wednesday, September 8, 2021

September 8, 2021 - 8th Anniversary Chat , Genetic Testing and Gyn Cancers

We were pleased to have Meg Farmer (@MegFarmerCGCMBA), Genetic Clinical Operations Director at My Gene Counsel (@MyGeneCounsel) join us on Wednesday September 8, 2021 at 8pm ET to discuss Genetic Testing and Gyn Cancers

Sixteen participants joined us for this important discussion. You may find analytics here and a transcript here. Resources may be found at the end of the post. 

Here is a summary of the responses to our topic questions. 

T1: The topic of genetics and cancer can quickly get confusing. What is genetic testing vs. genomic testing?
  • Genetic (germline) testing looks for hereditary mutations linked with increased risk of cancer. Genomic (somatic) testing looks for mutations in the tumor/cancer that may be useful for targeted cancer treatment 
  • Genetics are what is going on in ALL your cells ( often called germline testing). Genomic testing is specific to the tumor - it can be obtained through tissue or blood! 
  • Study of genes and their roles in inheritance vs. the study of all of a person's genes (the genome), including interactions of those genes with each other and with the person's environment #gyncsm https://www.genome.gov/about-genomics/fact-sheets/Genetics-vs-Genomics 
T2a: Mutations in what genes are known to be associated with ovarian cancer?
  • To start, mutations in many genes are linked with hereditary risk for ovarian cancer. Most people think of #BRCA1 and #BRCA2 first because mutations in these genes account for the most cases of hereditary ovarian cancer.  Other genes linked with hereditary ovarian cancer include #Lynchsyndrome genes, #BRIP1 , #RAD51C , #RAD51D , #PALB2 and more. Importantly not all genes are equal when it comes to level of risk and @NCCN guidelines for risk reducing options. 
T2b: Mutations in what genes are known to be associated with endometrial cancer?
T2c: Are mutations in any genes known to be associated with other gynecologic cancers?
T3a: What types of genetic testing are used to find hereditary reasons for gynecologic cancer?
T3b: Who is recommended to get genetic testing for hereditary gynecologic cancer?
  • To start, according to the @NCCN , #GeneticTesting should automatically be considered for those with epithelial #ovariancancer or #endometrialcancer younger than 50. https://t.co/QVemXGk8Gu https://t.co/2pfMrwwNkR  #GeneticTesting should also be considered if we see following combinations of cancer in one person or branch of a family tree: colon/endometrial/ovarian/other GI cancers or breast/ovarian/prostate/pancreatic cancers. If you’re concerned about hereditary cancer risk based on this or other personal/family cancer history, a #GeneticCounselor can help determine whether genetic testing is appropriate, best person in family to test, and best test. 
  • @asco has this guideline for testing women with an epithelial ovarian cancer dx - Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer: ASCO Guideline https://ascopubs.org/doi/full/10.1200/JCO.19.02960 #gyncsm
  • Every #ovariancancer patient should have genetic testing at the time of diagnosis.
  • Or for patients with endometrial cancer who have abnormal MMR (mismatch repair genes) - genetic testing for Lynch syndrome may be recommended. 
T4a: Do different mutations appear in tumors (genomic testing) than may appear in genetic tests?
  • Yes. All tumors have mutations. Most of these are only in the tumor (somatic) rather than there from birth and usually in all of a person’s cells (germline/hereditary). For every cancer type, there are genes in which we are most likely to see somatic mutations Just like multigene genetic tests are often used now, genomic tests usually test many genes at once too so oncologists have more info to work with when considering how a cancer is behaving and best treatment plans 
T4b: Is genetic testing ever recommended because of genomic test results?
  • To start, yes. There can be clues in somatic test results that a person may actually have a hereditary mutation. For example, if a #BRCA mutation is seen in any tumor type, or if a mutation is seen at a higher level in a tumor than would be expected if just somatic. Your doctor or genetic counselor can help clarify and develop a plan for hereditary genetic testing if such clues come up in somatic testing. Check out this blog on the subject from @InformedDNA #gyncsm https://informeddna.com/somatic-vs-germline-testing/

T5: What are some of the benefits of genetic and genomic testing?
  • To start, genomic (somatic) testing can help oncologists understand how a cancer behaves and potentially identify targeted treatments  #precisionmedicine Genetic (germline) testing can be helpful for those without cancer too if hereditary cancer is suspected in a family. If a mutation is identified, individualized plans can be made for early cancer detection, cancer risk reduction, and family planning.
  • Concerns about #genetictesting , health insurance, life insurance, and other policy types are common. Check out this guide on protections and exceptions of the Genetic Info Non-Discrimination Act (GINA) #gyncsm https://www.jax.org/education-and-learning/clinical-and-continuing-education/ccep-non-cancer-resources/gina-overview#
  • I think the importance of genetic testing after diagnosis is growing and growing - especially with newer treatments like immunotherapy. But all treatments are getting more targeted so knowing the genetic and genomic test results can be key to improved outcomes 
  • Definitely a lot goes into the decision to get tested before or after diagnosis. That's where genetic counselors can be so valuable. There are also wonderful groups like @FacingOurRisk that can help you think through the legal/insurance/etc. issues and beyond. 


We are happy to have celebrated our 8th Anniversary as a Chat and Community during this chat. Thank you for everyone who has helped to support the #gyncsm community these past eight years. 

It is time again for our biennial survey. This survey helps Christina and I plan the coming year's chat topics and, along with our health moderators, provide you the best information in the best format. This link to the community survey will be open until Sept 22 https://www.surveymonkey.com/r/SGD3SDQ . Please take some time to fill out this five minute survey. Thanks!

Note there will be no #gyncsm chat in October. Save the date for our next chat Wed, November 10, 2021 at 8pmET when we’ll discuss “Talking to Family and Friends about Cancer and Cancer Risk”.

See you in November! 

Dee


Resources 
Fact Sheet - Genetics vs Genomics

Who Should Be Concerned About Hereditary Cancer?

NCCN  Know What Your Doctors Know: Ovarian Cancer Part 3 – Genetic Testing

ASCO guideline 

Hereditary Cancer s in Gynecology ...

Patient-Centered Cancer Care: Somatic vs Germline Testing and the Role of Genetic Counselors  https://informeddna.com/somatic-vs-germline-testing/

Thursday, September 2, 2021

Genetic Testing and Gyn Cancer chat - Our 8th Anniversary Chat on the 8th!

 


We are pleased that Meg Farmer (@MegFarmerCGCMBA), Genetic Clinical Operations Director at My Gene Counsel (@MyGeneCounsel) will join us Wednesday September 8, 2021 at 8pm ET (7pm CT, 5pm PT) for our discussion of Genetic Testing and Gyn Cancers

We will discuss the difference between genetic and genomic testing, gene mutations associated with gyn cancers, germline and somatic testing for gynecologic cancers, recommended genetic/tumor  testing for gyn cancers, and how knowledge from the tests can help patients make treatment decisions.

Here's our topic questions:

T1: The topic of genetics and cancer can quickly get confusing. What is genetic testing vs. genomic testing?

T2a: Mutations in what genes are known to be associated with ovarian cancer?
T2b: Mutations in what genes are known to be associated with endometrial cancer?
T2c: Are mutations in any genes known to be associated with other gynecologic cancers?

T3a: What types of genetic testing are used to find hereditary reasons for gynecologic cancer?
T3b: Who is recommended to get genetic testing for hereditary gynecologic cancer?

T4a: Do different mutations appear in tumors (genomic testing) than may appear in genetic tests?
T4b: Is genetic testing ever recommended because of genomic test results?

T5: What are some of the benefits of genetic and genomic testing?

Our September chat will mark our 8th Anniversary as a chat and community. Has it really been 8 years? Seems like yesterday when Christina and I were emailing back and forth with Drs Dizon, Boulay, Markham and Becker-Schutte about starting a gyn cancer community similar to the #bcsm community. 

September also marks the time when we once again invite our community to take a survey. The survey helps Christina and I plan the coming year's chat topics and, along with our health moderators, provide you the best information in the best format. We will share the link to the survey in our after-chat blog post.

All September, which is Gynecologic Cancer Awareness Month (#GCAM), learn more about gyn cancers by following our Twitter posts and those of our supporters, @SGO_org, @IamCervivor and @ocrahope. 

We look forward to seeing you on the 8th. 

Dee and Christina

Wednesday, August 11, 2021

August 11, 2021 Cancer Myths

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
T4: Are there cancer myths specific to gynecologic cancers? Is there information you learned about a gyn cancer that you now know is wrong?
  • 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?

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


 

Sunday, August 8, 2021

Cancer Myths #gyncsm Chat August 11, 2021


Patients and caregivers may hear from family and friends or see advice and information both online and in print about what causes cancer, cancer treatments and risk reduction. Some of that advice is good but some is inaccurate and others are false - yet the information continues to spread. We invite you to join us on Wednesday, August 11, 2021 at 8pm ET (7 CT, 5 PT) as the #gyncsm community comes together to discuss Cancer Myths and shed some light on where you can go to find reliable and accurate information.

We'll use the following Topic Questions (T#:) to guide our discussion:

T1: For you, what makes something a cancer myth? Is it strictly false information or is it something more?

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)

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?

T4: Are there cancer myths specific to gynecologic cancers? Is there information you learned about a gyn cancer that you now know is wrong?

T5: What are some tips for handling cancer myths and responding (or not) when you encounter them - both in-person and online?

T6: What are your go-to sources for reliable information about cancer? For gynecologic cancers specifically?

 

In preparation for our chat feel free to read this article from the Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714  . 

We look forward to seeing you on Wednesday, August 11th. 

Dee and Christina



Wednesday, June 9, 2021

June 9, 2021 Gyn Cancer Research News - #SGOmtg & #ASCO21

This month we discussed the latest research news from the 2021 SGO Annual Meeting and the 2021 ASCO Annual Meeting . Both meetings were once again held virtually due to the Covid -19 pandemic. 

Twenty-two participants discussed a variety of research studies presented at the two meetings. You may find the complete transcript here and the analytics here

Here are some highlighted answers to our questions. 

T1: 
What #SGOMtg presentations did you personally find of most interest?
Anything practice-changing to note?
T2: 
There was a session at #SGOmtg entitled "Time to Return to the Drawing Board: Learning From Negative Trials." 
What are "negative" trials and what are some key take-aways?  
  • T2 I think hearing about treatments that are tried yet don't give the results the researchers expect are still valuable to hear about. 
  • T2 hard to hear about Negative trials. We learn what not to do; however, it’s disheartening for those in treatment.owed general ovarian screening over time not effective. Hard to learn but glad for these studies. 
  • T2 #SGOMtg Phase II Durvalumab (anti-PDL1)& Tremelimumab (anti-CTLA4) Administered in Combo versus Sequentially for the Treatment of Recurrent HGSOC No diff between arms in PFS  - Clear cell histology should be examined
  • In #sarcoma, the olaratumab trial failed to reach its goals. But it did spur a lot of thinking on trial design.
T3: 
Which #ASCO21 studies do you think may be of most interest to patients?
  • ASCO Abstracts link https://t.co/PlP2JFRsQZ ] #gyncsm
  • T3- definitely a theme of more is not always better. Longer duration of bevacizumab in upfront maintenance did not improve survival in #OvarianCancer 
  • From #ASCO21 I saw diversity and patient voice being highlighted in what seemed to be genuine ways. Long way to go but nice to see. The study about helping "light up" tumor so it can be removed looked fascinating.
  • We evaluated the wee1 inhibitor adavosertib alone or in combination with olaparib in women w #PARPi resistant #OvarianCancer - we saw activity in both arms including disease shrinkage and disease stabilization for >4 months. Many women have stayed on for >a year! 
  • Pafolacianine Sodium injection (OTL38) agent lit up tumors with an overexpression of folate receptor alpha so surgeon could remove.
  • T3 I was excited about a novel GEM vaccine every 4 weeks as maintenance, 91 patients Gem well tolerated. Benefit for Homologous Recombination proficient patients
  • A3: There were so many negative trials this year! But knowing that interventions cause harm without benefit (adding chemo in cx cancer, immunotherapy to ov cancer) is incredibly important to guide future therapies.  
  • This study by @Carisls was important at #ASCO21 for differentiating uterine #leiomyosarcoma from LMS elsewhere in the body. 
  • At #ASCO21, there was continued discussion on PARP inhibitors for (some) women with uterine #leiomyosarcoma. Also, the addition of temozolomide seemed promising. 

T4: 
What are some of the "hot topics" in gynecologic cancer research currently ( PARPs, cytoreductive surgery, immunotherapy, other)? What is still up for debate that patients/survivors/advocates should be aware of?
  • T4 I’m wanting more patients eligible for trials. We, as advocates, need to question this, particularly when we are on trial teams. 
  • From the plenary session #ASCO21 cervical Cancer study - OUTBACK showed that adjuvant chemotherapy added to standard chemoradiation therapy did not improve survival outcomes for women with locally advanced cervical cancer. 
T5:
Are there recent studies surrounding palliative care, survivorship, and psychosocial research that could help gyn cancer survivors? 
  • Different patients feel differently about scans, tumor markers, surveillance (some patients even like getting pelvic examinations!). What's most important is that communication is good so that you can land on a plan that works for patient and healthcare team. 
  • T5 There is this study by @DrAttai presented at ASCO. - Patient preferences for survivorship care #ASCO21 abstr 12064 w/ @DrN_CancerPCP @subatomicdoc @BZavaletaMD meetinglibrary.asco.org/record/200314/…
  • #gyncsm - There was an SGO study around neuropathy " Lauren Thomaier presents Genetic variants predictive of chemotherapy-induced peripheral neuropathy symptoms in gynecologic cancer survivors at #SGOMtg Fantastic work to identify patients most at risk of CIPN! Very important! "
T6
Both #ASCO21 and #SGOmtg held sessions on disparities in gynecologic cancer care. What was highlighted and how can we work to decrease disparities?
  • T6. Black women are more likely to get uterine sarcomas, compared with other racial/ethnic groups. Sarcomas tend to be more aggressive than endometrial carcinoma. But advocates can't seem to get any help in outreach. 
  • T6 Social Determinants, Not Biology: Time to Reappraise Genetics-Based Theories of Racial/Ethnic Cancer Outcome Disparities #ASCO21 #gyncsm Dr Ford: Biological Association of obesity and cancer. SC case I-95 corridor case study most residents are black, > poverty> Cancer rates
  • The first step is admitting that there is a problem which is why I was so glad to see inequities highlighted. We can ask questions of our healthcare systems, and advocate for our healthcare boardrooms to look like the waiting room... 

T7: 
For remaining time, please feel free to ask questions about or highlight other recent research you find of interest. What studies are on the horizon? What areas would you like to see more research?
  • T7: cancer treatment is very expensive. Are there any resources available for those who want to partake in a clinical trial out of state & cannot afford the “room & board” expense? 
  • People need to include #RareCancers in their discussions of #inequity. In gyn #sarcoma, we have less money for research, fewer experts, and less patient support.
  • t7: the research regarding early detection not improving survival is disheartening. I was under the impression that when it is caught early, you have a better chance of long term survival?!
  • I’d like to see more Data related to helping patients access trials outside their cancer center.

Note there will be no #gyncsm chat in July. Save the date for our next chat Wed, Aug 11, 2021 at 8pmET (new time for 2021) when we’ll discuss “Cancer Myths”.

Have a wonderful July!

Dee and Christina


Resources:

 
 

Adjuvant Chemotherapy Fails to Improve PFS and OS in Locally Advanced Cervical Cancer https://www.onclive.com/view/adjuvant-chemotherapy-fails-to-improve-pfs-and-os-in-locally-advanced-cervical-cancer
 
Oncology Nursing Society https://www.ons.org/