June 8, 2022 Gyn Cancer Research News #SGOmtg & #ASCO22

This month we reviewed the research presented during the SGO and ASCO Annual Meetings. We had twenty-six participants and 1.2 million impressions. You may read our transcript here and analytics here. 

Resources may be found at the end of the post. 

T1: What #SGOMtg presentations did you personally find of most interest? Anything practice-changing? 

• @SamBoseMD's study on RAD51 foci formation predicting DNA damage repair deficiency, and how PARP inhibitors may help more women with gyn #leiomyosarcoma
• I appreciated the study on older cervical cancer patients and how the current guidelines to stop screening after 65 are not working well in practice as there are conditions that need to be present to stop. https://www.cancertherapyadvisor.com/home/news/conference-coverage/society-of-gynecologic-oncology-sgo/sgo-2022/cervical-cancer-screening-guidelines-may-need-revision/
• For me Emeline Aviki's ,presentation on “Overspending on Dose-Specific Packaging of Lenvatinib for Endometrial Cancer,” which led to @EisaiUS announcing that it will expand its dose exchange program to cover dose reductions. https://www.sgo.org/news/eisai-adds-all-indicated-doses-to-lenvatinib-dose-exchange-program-after-research-presented-at-sgo-2022-annual-meeting/

T2: Which #ASCO22 studies do you think might be of most interest to patients?

• The ATHENA-MONO trial was very impressive - confirming benefit of #PARPi in the frontline maintenance setting for women with #OvarianCancer #ASCO22
• @NassifElise's presentation on the gut microbiome & response to #immunotherapy. Eat more fiber! (Unless you're prone to bowel obstructions)
• study done in Japan : bevacizumab (Avastin) added to first-line chemotherapy led to statistically significant improvements in PFS and (OS) in patients with advanced ovarian clear cell carcinoma (OCCC). Important those those with clear cell
• #ClinicalTrial examines combo #immunotherapy for #ovariancancer #gyncsm #ASCO22 #womenshealth https://www.uc.edu/news/articles/2022/06/trial-examines-combo-immunotherapy-for-ovarian-cancer.html

T3: What are some of the current "hot topics" in gynecologic cancer research? Are there things still up for debate that patients/survivors/advocates should be aware of?

• For me ~ anything that involves #immunotherapy or #targetedtherapy is something I want to know more about in #cancer treatment 
• There seems to finally be some great momentum around endometrial cancer and addressing disparities. That is exciting to see and long overdue
• Maximizing #treatment/#maintenance in HRD test negative #OvarianCancer remains a critical unmet need! 
•  Better understanding of how we can use molecular profiling in endometrial cancer to make treatment decisions is an important area of ongoing research. Where can we de-escalate treatment and who needs a more aggressive approach? 

T4: What research on palliative care, exercise, nutrition, survivorship do you think will impact patients lives the most - or that survivors should ask their providers about?

• Studies showing ethnic minorities, especially black women, are less likely to understand their prognosis, less likely to use hospice and more likely to end up in the ICU. We need better communication! 
• Don’t be afraid to ask about #sexualhealth or body image concerns. We don’t talk about these issues enough and they are so common in the wake of cancer treatment. 
• I saw a study on better genetic education for ovarian cancer patients, but I don't remember a lot of quality of life studies in general. It was nice to see emphasis on financial toxicity though. 
• Genetics and genomics become more and more important for cancer patients to understand and advocate for treatment plans that include testing.
• COUNSELING! Diagnosis, treatment, aftercare, terminal care. It’s important for EVERYONE involved.
• @fumikochino has done great work in the area of financial toxicity.
• New Small Study finds virtual mindfulness-based intervention for sexual health as a feasible treatment option for #ovariancancer & #breastcancer survivors ⁦@NewsMedical⁩ #gyncsm #bcsm #womenshealth https://t.co/RZDW2qK9uA

T5: Which equity issues were presented at #SGOmtg and #ASCO22? Are we seeing progress?

• T5 Black cancer patients aren’t offered the chance at clinical trials--but over 80% would consider joining one if offered. #gyncsm #ASCO22 The survey was led by Stephanie Walker.
• The data on black patients and endometrial cancer is sobering. So was the ASCO study about black patients not being offered clinical trials. Look forward to seeing studies with practical steps and program models.
• #COVID-19 Outcomes in Patients With Gynecologic Cancer ⁦@CancerTherAdvsr⁩ #gyncsm #ASCO22 #womenshealth https://www.cancertherapyadvisor.com/home/news/conference-coverage/american-society-of-clinical-oncology-asco/asco-2022/covid-19-gynecologic-cancer-patient-outcomes/

T6: For our last topic, we'll let our participants ask any questions they have about recent gynecologic cancer research. Also, what do you want to see research resources focused on? Are there gaps in research you would like to see addressed?

• I'd like women with gyn #leiomyosarcoma who are treated in a private practice to know that they can get a second opinion from a #sarcoma medical oncologist. Collaboration helps patients know all of their options for treatment.
  
• T6 I heard about women having PARP resistance - like becoming platinum resistant. I wonder how many cycles of PARP does this start? 
• https://www.lmsdr.org/ is partnering with @SARCtrials to help @JoannaPrzybyl with her research on ctDNA in #leiomyosarcoma. It would be great if ULMS could be better detected before surgery
• We are excited about our @MDAndersonNews #PARPi alone trial for women with #OvarianCancer that have #BRCA mutations and need neoadjuvant therapy! Data coming soon

We will not be chatting in July but we hope to see you on August 10, 2022 at 8pmET for our chat on Advocacy for Yourself and Others. 

Have a safe July! 

Dee and Christina

 

RESOURCES 

Search Twitter for #SGOmtg  #ASCO22  #gyncsm  #leiomyosarcoma

 

SGO meeting : 

@stigetta - https://ocrahope.org/2022/04/ovarian-cancer-highlights-society-of-gynecologic-oncology-meeting-2022/

ASCO Post https://ascopost.com/Meetings/?m=SGO+2022+Annual+Meeting+on+Women%E2%80%99s+Cancer

Cancer Network https://www.cancernetwork.com/conference/sgo

Cancer Therapy Advisor https://www.cancertherapyadvisor.com/home/news/conference-coverage/society-of-gynecologic-oncology-sgo/sgo-2022/

ASCO Meeting :

ASCO Abstracts https://conferences.asco.org/am/abstracts-posters

ASCO Post https://ascopost.com/Meetings/?m=2022+ASCO+Annual+Meeting

Gyn Cancer News - #SGOmtg & #ASCO22 June 8, 2022

Stay up to date with the latest gynecologic cancer research by joining the #gyncsm community as we discuss recent news from the SGO Annual Meeting (#SGOmtg) and the ASCO Annual Meeting (#ASCO22) during our June 8, 2022 chat at 8pmET. 

 

We will discuss HOT topics in gyn cancer research presented at both meetings, presentations that oncologists and patients who attended found most interesting, which research (including palliative care and survivorship) may make the greatest impact on patient lives, and cancer equity topics and the methods to improve the inequities. 

Chat Questions:

T1: What #SGOMtg presentations did you personally find of most interest? Anything practice-changing? 

T2: Which #ASCO22 studies do you think might be of most interest to patients?

T3: What are some of the current "hot topics" in gynecologic cancer research? Are there things still up for debate that patients/survivors/advocates should be aware of?

T4: What research on palliative care, exercise, nutrition, survivorship do you think will impact patients lives the most - or that survivors should ask their providers about?

T5: Which equity issues were presented at #SGOmtg and #ASCO22? Are we seeing progress?

T6: For our last topic, we'll let our participants ask any questions they have about recent gynecologic cancer research. Also, what do you want to see research resources focused on? Are there gaps in research you would like to see addressed?

 

We hope you can join us on Wednesday, June 8, 2022 at 8pm ET for this important chat. 

Dee and Christine

#gyncsm co-founders

May 11, 2022 Digital Health Fair

We held the 2nd #GYNcsm Digital Health Fair during our May chat time slot. We had 63 participants, 638 tweets and 3.5 million impressions. You may read the transcript here and more analytics here.

We began our chat with two questions:

T1: What kinds of information and support do you, your loved one, or those you support find to be most needed during diagnosis, treatment, and on-going? #gyncsm

Responses included:

• I think the kind/type of information and support needed is not one size fits all and can also change along the way, but I always found hearing other patients' stories to be helpful
• At first I see a big need to not feel alone. Also a competing desire to learn all you can but also not wanting to overwhelm yourself.
• Treatment options & talking to Patients who are going through the same thing as you are. HOPE
• I find that uterine cancer patients and survivors require lots of information because the majority of those that reach out to us have received very little information specific to uterine/endometrial cancer. mental and emotional support
• Mental, Emotional, Physical, and Financial
• It is very important for a gyn cancer patient to be treated by a gynecologic oncologist. Patients can look up gyn cancer practitioners in their area through the https://t.co/B5n3t5cnZW Seek a Specialist link https://t.co/ZqwGXLFwA7

T2: For peer and emotional support, do you attend in-person groups, online groups, one-on-one? Why or why not? #gyncsm

 

Responses included:

• I attend and we offer virtual online support groups. They are easier to find and safer. We plan on starting in-person support as soon as we get more participation
• I attend mostly virtual groups however the SISTER Study recently held a Summit in Seattle and I had the pleasure of meeting 12 of my closest friends IRL for the first time. All of us, Black endometrial cancer survivors!!
• For me the support began at my doctors office. Then online to “meet” people with my condition. Lasting friendships made & now private calls.
• I think it is important to find a group you really connect with. It might be an all-cancer group or other kinds of grouping than your exact cancer. And you could do a peer 1-1 but also be in a different organized group like by age.
• NOCC’s Teal Hearts Network, a regional peer-to-peer online support group, allows you to connect with other #ovariancancer survivors for the emotional support needed to navigate this journey. https://t.co/GhHEU8c3Sg
• There is an emotional connection you can make with others going through the same things you are that can happen much easier at small in-person gatherings

Then we moved on to the Digital Health Fair portion of the chat. We asked each organization, in alphabetical order by Twitter handle, to tell us about their mission, programs and awareness message. Since we had a large number of organizations participating we will list each organization by handle with a few tweets about their mission or program (Complete transcript) .

@advovarianca_hu
Our mission is to provide those impacted by ovarian cancer with a space to find information, share experiences, and connect with others who understand. You can find us on our website, https://advancedovariancancer.net/ on Instagram, @advancedovariancancer, on Twitter, @advovarianca_hu, and on Facebook at AdvancedOvarianCancerHU. We offer first-hand articles written by our patient leaders living with ovarian cancer, stories shared by community members, and opportunities to connect with others in our forums.

@Alive_And_Kickn
AliveAndKickn’s mission is to improve the lives of individuals and families impacted by Lynch syndrome and associated cancers through research, education and screening. In partnership with @ColonCancerCoal, we will be hosting the 2022 Living with Lynch Patient Workshop in Boston Sept 15-18th. You can apply to be considered here, https://www.livingwithlynch.org/ . AliveAndKickn also hosts a virtual patient community discussion series. Various topics related to Lynch syndrome are discussed each month, check out the schedule, topics and registration here, https://www.aliveandkickn.org/2022-patinet-community-discussions Women with Lynch syndrome hereditary cancer gene mutations are at high risk for several different gyn cancers. Learn more https://www.aliveandkickn.org/ 

@CancerAdvocacy 
NCCS - National Coalition for Cancer Survivorship represents millions of Americans who share the survivorship experience of living with, through, and beyond a cancer diagnosis. We advocate for policy changes that ensure quality cancer care for all. Our work reflects the needs of survivors at the national level. NCCS’s Cancer Policy & Advocacy Team is a program for survivors and caregivers to advocate for policies that address cancer survivors' needs. Learn more and complete the questionnaire to become a part of our nationwide network of advocates. https://canceradvocacy.org/get-involved/cpat/ NCCS's Survivorship Champions program is an opportunity for clinicians and researchers to exchange information about best practices, lessons learned, and effective models of cancer survivorship care. https://canceradvocacy.org/get-involved/survivorship-champions/

@CancerAndCareer
Cancer and Careers empowers & educates people with any kind of cancer to thrive in any kind of job, by providing expert advice, interactive tools & educational events. All of our programming is offered 100% free of charge to patients and survivors. We offer 3 conferences a year. Registration is open for our next one on Fri, 6/24 ( https://www.cancerandcareers.org/en/community/events/conference ) Other programs include: Monthly webinars https://www.cancerandcareers.org/en/community/events/webinars Resume review  https://www.cancerandcareers.org/resume_reviews/new & websites in English https://www.cancerandcareers.org/en & Spanish  https://www.cancerandcareers.org/es where you can order materials, ask Qs to experts & more. You can reach out to us by email (cancerandcareers@cew.org) or by phone (646-929-8032).

@CancerDotNet 

Our site provides information and resources for people with cancer and their caregivers, that is easy to understand and comprehensive. We strive to educate, support, and help people with cancer and their loved ones with trusted, expert-reviewed information and resources. We're marking #20years of providing #CancerEducation as @ASCO's #PatientEducation resource. 

A #Survivorship Care Plan (SCP) is a way to keep a record of your cancer treatments & recommended follow-up care to support your future health. @ASCO offers a series of SCP forms, incld new additions on cervical, uterine, & ovarian cancers https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans   https://www.cancer.net/

@CancerHopeNet
For more than 40 years, we’ve been providing hope and #peersupport for cancer patients and the people who love them. Our free and confidential matches are available at any point in a #cancer journey – from #genetictesting, through dx, treatment, survivorship, bereavement . Each of our matches (connection between volunteer mentor and client) are supervised by our Programs Team - healthcare/social work professionals – who provide additional resources and information for patients and caregivers. Find us online – https://cancerhopenetwork.org/ - or by calling 877-HOPENET (877.467.3638). Talk with a member of our Programs Team to find a survivor or caregiver mentor who’s a perfect fit. #gyncsm https://t.co/kdiXD5GCfl

@ECANAwomen 

ECANA is a black EC survivor-led infrastructure for personal empowerment to better health - through knowledge, community building, and action - for African-American women at risk and those already affected by endometrial cancer. ECANA promotes transparent, patient-centered research to reduce racial disparities in endometrial cancer through project development and public promotion of research efforts to that effect. The S.I.S.T.E.R Study is one example of those projects. https://www.pcori.org/research-results/2020/comparing-three-ways-offer-social-support-black-women-during-treatment-endometrial-cancer "Survivors Sanctuary" is a mindful movement program that runs every two weeks and features chair yoga and conversation for black women at any stage of their cancer journey. Register at https://ecanawomen.org/ and sign up for our quarterly newsletter to stay informed of happenings. CEP's-EC (Community Empowerment Partners-Endometrial Cancer) is a flagship program for ECANA that was adapted from Cierra Sisters' original community empowerment program that educates black communities about specific disease states. 

@elixirfund 

An organization dedicated to improving the comfort & care of cancer patients & caregivers. The Elixir Fund Registry is a free, easy to use tool that allows patients and caregivers to create a list of their needs with links to e-gift cards for things like grocery gift cards, meal delivery, gas gift cards, massage and more. The Registry can be shared with family and friends or made public for the larger community to help.  https://www.elixirfund.org/registry/  https://www.elixirfund.org/

@IamCervivor
#Cervivor is a global community of patient advocates who inspire and empower those affected by #cervicalcancer by educating and motivating them to use their voices for creating awareness to #endSTIgma, influence decision and change, and #endcervicalcancer. You can find out more by going to our website at https://cervivor.org/ or visit https://linktr.ee/Cervivor to connect with us across our social media platforms, podcast, award-winning YouTube channel, and to sign-up for our newsletter. #Cervivor has a premiere event called #CervivorSchool for patient advocacy training. We also have a private Facebook group and a monthly support group for #cervicalcancer patients/survivors. And we have a fitness community for all cancer survivors.  Another program we offer is our Comfort Care & Compassion Program for newly diagnosed or for those facing a metastatic recurrence of #CervicalCancer. The CCC Program was designed by survivors to close the support gap: https://docs.google.com/forms/d/e/1FAIpQLSdqnQ4tTudLWj6yN-Y-3uPJ5Gua9MYsOYRFuWdm1akBIWbvlg/viewform

@NOCC_National
Our #mission is to save lives through the prevention and cure of #ovariancancer and to improve quality of life for survivors and their caregivers. https://ovarian.org/ There is no screening test for #ovariancancer; a Pap test cannot detect the disease. So, women need to know their bodies, be aware of the signs and take early action. Our #peersupportprograms offer ways to connect with other survivors and caregivers who can provide unique perspectives on your #ovariancancer journey: https://ovarian.org/find-support/resources-support/ . Our #onlineprograms offer education on #ovariancancer and quality of life issues. From #virtual education to our monthly #FacebookLive series Ask the Experts, we deliver timely and relevant education. Our #directsupport services aim to reduce barriers associated with #ovariancancer care, such as #financialassistance, meal delivery, and mental health services. All of these are available at no cost: https://ovarian.org/find-support/resources-self-care/ Ready to learn more and join our TEAL community? Sign up for our newsletter today! We are here to connect - got questions? Ask away! https://nocc.ovarian.org/emailsignup

@ocrahope 

Ovarian Cancer Research Alliance (OCRA) is the largest non-government funder of ovarian cancer research and has invested $110 million in research since its founding. OCRA fights ovarian cancer from all fronts, including in the lab and on Capitol Hill, and through innovative programs to support patients and their families. Visit us at https://ocrahope.org/ & follow us on social: @ocrahope OCRA offers support for all gynecologic cancer patients & their loved ones! Visit https://ocrahope.org/patients/resources/ to get more info about our patient support line, Woman to Woman peer mentor program, Staying Connected online support groups & @teaminspire global online community. Join us in making a difference! Our Survivors Teaching Students volunteers educate rising healthcare professionals. Our team of Advocate Leaders engage with elected officials about critical issues. Learn about ways to get involved: https://ocrahope.org/get-involved/

@ovarcome

To raise global awareness, to fund research, and to provide financial, psycho-social & informational support to Ovarcomers. Learn about our #OvarCare financial, psycho-social and informational assistance program, now operational in partnership with ~250 hospitals nationwide! Join us for our #TealTruths ONLINE Group Counseling sessions each month,  https://ovarcome.org/teal-truths/ Stay updated with the latest & greatest advances in #OvarianCancer and learn from the Global Experts! Let's #ConnectOvarCoffee every 2 weeks! WATCH all videos aired to date ON DEMAND here: https://ovarcome.org/connect-ovar-coffee/  https://t.co/e0pnXyy0Kv  Ask The Expert DIRECTLY Online! Learn about this program here: https://ovarcome.org/oc-360-live/  #OC360LIVE! 

@ovariancancerco

The World Ovarian Cancer Coalition was founded in 2016 and is a global network of close to 200 patient advocacy orgs with a vision of a world where every woman with ovarian cancer has the best chance of survival, and the best quality of life – wherever she may live. Our year-round work focuses on 3 pillars - awareness raising (like #WOCD2022), development of original data/research to empower the #ovariancancer community and supporting our partner organizations to help them do their important work in their countries. We are currently working on the The Every Woman Study™️: Low- and Middle-Income Edition with @IGCSSociety to capture experiences of those with #ovariancancer in up to 30 LMIC, where 70% of those diagnosed live yet where they have limited/no access to care. If the #ovariancancer community could only do one thing, especially just after #WOCD2022, it would be to share with everyone they know the 5 Facts of Ovarian Cancer.#gyncsm https://t.co/1tT1UvMDFG We have these 5 Facts in 22 different languages here: https://drive.google.com/drive/folders/1Ewf8hL3N0Ru3OPOQAqu2PbixC9VGQMYK If you see a language missing that you can help us with, please DM us as we would love to offer even more. 2nd thing you can do is support your local patient org ;-)

@power4patients
PEN's mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence and put them in control of their care so they best, most personalized care available. To help improve #healthliteracy, we created digital sherpa™ and Digitally Empowered™ because we believe all patients, regardless of age and technical ability, should have access to health information about their care. Learn more: https://powerfulpatients.org/digitally-empowered-and-digital-sherpa/ . Our Clinical Trials 101 program aims to debunk misconceptions and fears about trial participation and provides patients with knowledge and confidence to feel well-informed when discussing treatment options with their healthcare team. Learn more: https://powerfulpatients.org/help-by-cancer-diagnosis/generalhealthinfo/clinical-trials-101/

@SGO_org
The Foundation for Women’s Cancer @GYNCancer is the official foundation of the Society of Gynecologic Oncology. FWC’s #MoveTheMessage campaign seeks to increase awareness and drive early diagnosis of the 5 gyn cancers. https://www.foundationforwomenscancer.org/movethemessage/  @GYNCancer recently released 7 updated brochures about the 5 gyn cancers, CA125 and clinical trials https://t.co/p9FdPBueQx FWC is currently translating some materials into Spanish and Mandarin Chinese. Brand new fact sheets on rare tumors in #gyncancer are also available on the @GYNCancer website. https://www.foundationforwomenscancer.org/gynecologic-cancers/educational-materials/

@SHAREing
SHARE is a national nonprofit that supports, educates, and empowers anyone who has been diagnosed with women’s cancers. Learn more and connect with our community of knowledgeable survivors, women living with cancer, and healthcare professionals at https://t.co/u78nMdGerT All of our Support Groups and Educational Programs are online and free! We offer programs and support for those with ovarian, uterine, and cervical cancer. #GYNCSM https://t.co/Lm3cH0y81J

@ShelleyMLM

We are the Mucinous Ovarian Cancer Coalition. Launched by my late sister in September of 2020. In addition to financial supportnd opinions, and resources, we fund research grants. RFPs for Rhonda’s Award begins on June 2nd for grants up to $50k. https://t.co/tFgEAIE4kv

Smart Patients @RobinSmrtPtient

Smart Patients is like a caring family. Women share posts with other patients who understand their cancer, providing guidance, emotional support, news of research, and available trials. For more details on how we operate, see http://Smartpatients.com/faq. We're proud of the communities our members have built and of their dedication to sharing support and accurate information. Medical experts often tell us they had no idea patients knew so much!

@StupidCancer

Stupid Cancer is a 501(c)3 nonprofit organization whose mission is to help empower everyone affected by AYA cancer by ending isolation and building community. Check our website is https://t.co/M4pF8JcERN We at Stupid Cancer host a range of interactive and educational programs on topics important to the AYA cancer community. We host monthly discussions series led by experts on topics important to the young adult cancer community where you get to unpack your experiences. We also host casual, and social events known as digital meetups which give a chance for AYA peers to connect and party with others in the community. And we also host quarterly open mic nights for the community to share their stories with their peers. Registration is still open for #CancerCon Live 2022 in Minneapolis this June! This conference brings together hundreds of patients, survivors, caregivers, advocates and health professionals to learn, share and build community. For more info visit https://t.co/imbFdtZRDt. To stay up-to-date with the Stupid Cancer community and events, follow us on social media @stupidcancer. Also visit https://t.co/M4pF8JcERN to check out our events calendar.

 

@SuzieSiegel 
@SarcomaAlliance has FB pages for support & news, an annual conference & tons of info. The problem for women with gyn #sarcoma is that gyn nonprofits may have little or nothing on sarcoma. It can be confusing to patients who only understand that they have cancer. Sarcomas should be treated by centers of excellence with a multidisciplinary team specializing in #Sarcoma. These tumors are too rare and too aggressive to not seek the BEST care.@reininsarcoma @CareSarcoma #Rhabdomyosarcoma  (@pgargollo) @SarcomaAlliance has FB pages for support & news, an annual conference & tons of info. The problem for women with gyn #sarcoma is that gyn nonprofits may have little or nothing on sarcoma. It can be confusing to patients who only understand that they have cancer.  

@ucan2020
Uterine Cancer Awareness Network is an IRS-approved 501c3 dedicated to raising public awareness regarding uterine/endometrial cancer with a strong focus on underserved communities. UCAN is dedicated to helping patients, survivors, and caregivers find support and patient services specific to endometrial cancer. If we don’t offer what’s needed, we will search our network to help find it and take some of the burdens off you! We currently provide monthly virtual support groups, free chemo caps, UCAN treatment bags, Hydration products, and free awareness seminars hosted by our founder who's a survivor diagnosed at 27. Our Peach Sister Program is a program we offer that will match you with a sister that will grab your hand and walk this walk with you! #gyncsm https://t.co/UQNK8tmDdI You can reach UCAN at uterinecancerawarenessnetwork@outlook.com or on our website at https://t.co/f0PozYTSWL we are also on FB!

Thank you to all the organizations who joined us. 

See you on Wednesday June 8, 2022 at 8pm ET for our Chat on "Gyn Cancer Research News" 

Dee

Digital Health Fair - May 11, 2022 #gyncsm Chat

The #gyncsm community is happy to once again be holding a Digital Health Fair on Twitter. The Fair will be part of our regular chat on Wednesday, May 11, 2022 at 8pm ET. After a few initial questions for all participants, we will ask each of our attendees to share a few tweets highlighting their mission, website, resources/programs, and key awareness messages.

We have an amazing group of organizations joining us! Check out the list below as of May 11, 2022:

@Advovarianca_hu  Advanced Ovarian Cancer Network

@Alive_And_Kickn  Alive And Kickn

@CancerAdvocacy NCCS

@CancerDotNet Cancer Dot Net/ ASCO 

@CancerHopeNetwork Cancer Hope Network

@CancerandCareer Cancer and Careers 

@ECANAwomen Endometrial Cancer Action Community for African-American Women 

@Elixirfund Elixir Fund 

@IamCervivor Cervivor

@InfoASHA National Cervical Cancer Coalition 

@NOCC_National NOCC

@ocrahope OCRA 

@Ovarcome Ovarcome 

@OvarianCancerCo World Ovarian Cancer Coalition 

@Power4patients Patient Empowerment Network 

@RobinSmrtPtient Smart Patients 

@SGO_org SGO 

@SHAREing SHARE

@StupidCancer Stupid Cancer 

@Ucan2020 Uterine Cancer Awareness Network 

Come join us and learn what resources are available for those diagnosed with a gynecologic cancer. 

Also, remember that May 8th is World Ovarian Cancer Day. 

See you on Wednesday.

Dee and Christina

March 9, 2022 Cervical Cancer Updates and Global Impact

The #gyncsm community was pleased to have Morgan Newman, MSW, Community Engagement Liaison for Cervivor (@IamCervivor) join us to chat about Cervical Cancer Updates and Global Impact. We had eighteen participants join us for the informative discussion.

Below are samples of the responses to our chat topic questions. You may view the complete transcript here. You may also find links to resources at the end of the post.

T1: What are the current HPV vaccination guidelines? What have been some of the main changes and how do these affect different age groups?

• T1: HPV vaccine works best when given before any exposure to HPV. Currently recommended are: - 2 doses for Age 9-14 (routinely 11-12) - 3 doses for Age 15-26 - Shared-Decision-Making w/ patient on whether to vaccinate Age 27-46. More via @CDCgov: cdc.gov/vaccines/vpd/h…
• A1: You'll see the ages have changed recently for the HPV vaccine to start early at 9 and 10. We love this resource from @HPVRoundtable that maps it out: 

• Parents can check out this @CDCgov website cdc.gov/hpv/parents/va… 
• #HPVvaccine; ideal and best for preteen 9-12 for all genders not just female! But definitely up to age 26; also approved for all up to age 45! Risk reduction not only for cervical ca but other #HPVcancers head/neck, #vulvarcancer , anal cancer etc…

T2: What are the current cervical cancer screening guidelines? What are some concerns around the updates?

• @AmericanCancer: #CervicalCancer testing should start at 25. Ages 25 to 65 should have a primary HPV test every 5 years. There are other considerations to read about here: https://www.cancer.org/cancer/cervical-cancer/detection-diagnosis-staging/cervical-cancer-screening-guidelines.html#:~:text=Cervical%20cancer%20testing%20(screening)%20should,test%20alone%20every%203%20years.. #GYNCSM
• A2: The concerns are real. A lot of us were diagnosed in our 20s with #cervicalcancer, the vaccine uptake is not quite there yet, and we're concerned women will become separated from their providers allowing them to fall through the cracks: https://cervivor.org/new-cervical-cancer-screening-guidelines-the-good-the-not-so-good-the-need-to-educate/. #GYNCSM
• T2: overview: Pap Smears look for cell changes and HPV Tests look for the virus that causes almost all cervical cancers. -Pap for Age 21-29 -Pap and/or HPV Test for Age 30-65 -Shared-Decision-Making w/ patient over 65, based on history. https://www.cdc.gov/cancer/cervical/basic_info/screening.htm
• T2: Pelvic exams still have value, especially if you have symptoms. Annual gynecologic exams are still an important part of care. Why Annual Pap Smears Are History – But Routine Ob-Gyn Visits Are Not https://www.acog.org/womens-health/experts-and-stories/the-latest/why-annual-pap-smears-are-history-but-routine-ob-gyn-visits-are-not
• re: over 65 screening: “The only way to know it is safe to stop being tested after age 65 is if you have had several tests in a row that didn’t find cancer within the previous 10 years, including at least one in the previous five years.”https://www.cdc.gov/cancer/dcpc/research/articles/older-women-cervical-cancer-screenings.htm
• T2: Follow-up is important after screening. Important Information via @theNCI : Next Steps after an Abnormal Cervical Cancer Screening Test: Understanding HPV and Pap Test Results https://www.cancer.gov/types/cervical/understanding-abnormal-hpv-and-pap-test-results
• A2 followup appropriate after abnormal pap or persistent HPV with high risk types is key! Requires knowing the results; navigation; insurance access to quality colposcopy; many community level data screening rates look “ok” but incidence/mortality still too high!
• A recent publication showed advanced stage at diagnosis and worse outcomes for women diagnosed with cervical cancer after age 65 (when screening cessation is recommended). Guidelines are just that - they must be individualized. https://www.sciencedirect.com/science/article/abs/pii/S0090825822000257?casa_token=U3jMRqfeetsAAAAA:gJ79TYp55Plj-h6RelqWWUtK5IJAJLvCQoo0xVeJOszSrWM1wj8Z2IIVWJsNftfzLMdemYPXeQ

T3: What are some of the recent treatment advances for cervical cancer? How can patients stay up-to-date and also learn about clinical trials?

• A3: There have been more options for #clinicaltrials for metastatic/recurrent #cervicalcancer being approved: immunotherapy treatments, including activated T-cells (that can recognize and kill cancer cells), therapeutic vaccines, and immune checkpoint inhibitors. 
•  The latest #CervicalCancer Treatment guidelines (Jan2022) from @NCCN are available: https://t.co/d7OdABRFLg NCCN Guidelines are a good place to start so you can ask questions about your doctor's plan for your care and discuss any variations from the guidelines.
• A3: We know finding information on #clinicaltrials can be daunting so we put this together: https://t.co/aAid1v4Luw. We are also fortunate to have great community partners like doctors at @NIH volunteering their time to navigate options and organizations like @Ancora_AI
• T3: Patient groups like @IamCervivor @StopHPVCancer and others can help with information on the latest #cervicalcancer treatments and provide guidance of finding clinical trials.
• A3: immunotherapy in cervical cancer nejm.org/doi/full/10.10…
• @ASCO guidelines for management of invasive Cervical cancer were updated in 2021 https://t.co/Yd1l5bRfGO #gyncsm "Clinicians may offer upfront pembrolizumab and chemotherapy with or without bevacizumab"
• A3: Ask your healthcare team about clinical trials. Get a second opinion even you like your healthcare team and want to stay with them. There is always something to learn. 

T4: How has HPV vaccination and cervical cancer screening and treatment been impacted by the pandemic?

• @CDC_Cancer and @KPCommHealth: #CervicalCancer screening rates dipped 8% for women aged 21 to 29 years during the first 2 months of 2020 compared with the same period in 2019. https://jamanetwork.com/journals/jama/article-abstract/2777251 
• Cervivor has been committed to our messaging, stressing the importance of #TakeCareofYou2022 our campaign that started in January during #CervicalCancerAwarenessMonth: cervivor.org/what-we-do/cca…. 
• A lesson learned from the pandemic could be allowing pharmacists to administer #HPVvaccines.
• T4: Screening for all types of cancer have been lower during the pandemic and are only recently starting to climb again. Cancers may have been missed or may be caught later. It is important for anyone at risk for #cervicalcancer to get their screening back on track.
• A4: I know in my home state of #Iowa, it is a top priority to get screenings back on track
• The NJ CEED Program is a grant-funded health screening program available to residents which includes cervical cancer screenings https://nj.gov/health/ces/public/resources/njceed.shtml
• T4: Unfortunately, childhood vaccination rates have plummeted during the COVID pandemic. According to @CDCgov the number of teens receiving an HPV shot in the US fell by 70 percent in 2020. One study in Boston looked at way to address: https://www.bu.edu/articles/2022/could-covid-pandemic-and-vaccine-hesitancy-cause-hpv-polio-measles-return/

T5: What is the research showing about disparities in prevention, screening, diagnosis and treatment for cervical cancer? 

• Despite the fact that #cervicalcancer is preventable and treatable, the @theNCI estimated that 4,290 women would die of cervical cancer in the U.S. in 2021. We need to recognize the fact that #BlackWomen are dying from cervical cancer at a disproportionate rate. 
• T5: one recent study: Latinos Suffer Higher Rates of Liver, Cervical, and Stomach Cancers https://salud-america.org/latinos-suffer-higher-rates-of-liver-cervical-and-stomach-cancers/
• @hrw released their report on #cervicalcancer in rural Georgia: bit.ly/3LTrwvr. You can also catch our Founder, @tamikafelder, being interviewed on @NPR about #BlackWomen and cervical cancer: https://www.npr.org/2022/01/31/1076895914/january-is-cervical-cancer-awareness-month-in-the-u-s?fbclid=IwAR38Y288SQ5Tooi_zS1r9Te6MTZpNZvqPGMObWBKJVS1UKValYlo7Zk6S-E and https://www.kcur.org/podcast/up-to-date/2022-02-26/black-women-are-chronically-failed-by-the-american-healthcare-system?fbclid=IwAR0D7g6rH9_uL9Efl2x9at17OaVhS8CKdl3cMASoHP0ehqkT2OmojhF1hNw. 
• Latinas are the most affected by a #cervicalcancer diagnosis.
• A5: One study states: "Compared with Americans overall, #AsianAmerican screening rates are lower for #cervicalcancer (75.4% vs. 83.0%), breast cancer (64.1% vs. 72.4%), and colorectal cancer (46.9% vs. 58.6%)": bit.ly/3KxO2Iq.
• Why Are Many Women Overdue for Cervical Cancer Screening? #gyncsm https://www.cancer.gov/news-events/cancer-currents-blog/2022/overdue-cervical-cancer-screening-increasing?cid=eb_govdel "Asian women were most likely to be overdue for screening in 2019"
• More than 1/2 of new cervical cancer cases occur among women who have never or rarely been screened. When you don't have a consistent provider, it's hard to stay on a screening schedule. This disproportionally affects communities of color and rural areas.
• JAMA  https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2788175 "those identifying as LGBQ+ were less likely to be screened vs heterosexual (32.0% vs 22.2%;"

T6: Yesterday was #InternationalWomensDay. What new initiatives are WHO and others bringing to global efforts to reduce disparities and eradicate cervical cancer?

• @WHO is committed to eliminating #cervicalcancer by attaining: *90% of girls fully vaccinated by 15 *70% of women screened using a high-performance test by the age of 35 (again by 45) *90% of women with pre-cancer treated & 90% of women with invasive cancer managed 
• T6: Cervical cancer presents an amazing opportunity because we actually have the science to, in many cases, prevent it plus catch and treat it in the pre-cancerous stage.
• T6: In 2018, the WHO Director-General announced a global call for action to eliminate cervical cancer and in 2020 the World Health Assembly adopted the Global Strategy for cervical cancer elimination https://www.who.int/initiatives/cervical-cancer-elimination-initiative
• We were shining a light on cervical cancer with @WHO as they formally launched a global strategy to eliminate #cervicalcancer. We continue to advocate in solidarity by sharing our stories: https://www.youtube.com/watch?v=0HPcWZSSrCo . #GYNCSM #GlowTeal
• @ASCO has put out and recently updated Resource-Stratified Guidelines for the treatment of cervical cancer - with tiers to match guidelines with available resources in different areas.

We will not be chatting in April but we look forward to having you join us on Wednesday, May 11, 2022 for out 2nd Annual Digital Health Fair. If your organization would like to join us please DM us on Twitter (@gyncsm) or email us at gyncsm@gmail.com .

Thank you to all those who shared info about our chat. 

Happy Spring,

Dee and Christina

ADDITIONAL RESOURCES

Think You’re Too Old to Get the HPV Vaccine to Prevent Cancer? Maybe Not 

mskcc.org/news/think-you…

Nearly One-in-Five Women Diagnosed with Cervical Cancer Over Age 65

https://www.cancernetwork.com/view/nearly-one-five-women-cervical-cancer-are-diagnosed-after-age-65

Cervical Cancer Treatment in Rwanda

https://www.sciencedirect.com/science/article/pii/S0090825821016280

Advancing NIH Research on the Health of Women 2021 Conference  (Click on presentation tab to access videos) 

https://orwh.od.nih.gov/about/newsroom/events/55th-meeting-advisory-committee-research-womens-healthconsensus-conference

Previous decline in cervical cancer incidence begins to reverse in low-income U.S. counties and stall in high-income counties

https://www.newswise.com/articles/previous-decline-in-cervical-cancer-incidence-begins-to-reverse-in-low-income-u-s-counties-and-stall-in-high-income-counties?ta=home

Cervical Cancer Updates and Global Initiatives March 9, 2022

 

The #gyncsm Community will be chatting on Wednesday, March 9th at 8pm ET (7pm CT, 5pm PT) about Cervical Cancer Updates and Global Initiatives. We are pleased to be joined by Morgan Newman, MSW, Community Engagement Liaison for Cervivor (@IamCervivor). Cervivor is a community of advocates who empower those affected by cervical cancer through education and using their voices to raise awareness to end stigma, influence change and end cervical cancer. 

Their manifesto is: 

We will use the following topic questions to help guide our chat:

T1: What are the current HPV vaccination guidelines? What have been some of the main changes and how do these affect different age groups?

T2: What are the current cervical cancer screening guidelines? What are some concerns around the updates?

T3: What are some of the recent treatment advances for cervical cancer? How can patients stay up-to-date and also learn about clinical trials?

T4: How has HPV vaccination and cervical cancer screening and treatment been impacted by the pandemic?

T5: What is the research showing about disparities in prevention, screening, diagnosis and treatment for cervical cancer? 

T6: Yesterday was #InternationalWomensDay. What new initiatives are WHO and others bringing to global efforts to reduce disparities and eradicate cervical cancer?

We look forward to having you join us for this important discussion.  

Dee and Christina

Co-founders,  #gyncsm Twitter Community