December 11, 2024 Final #gyncsm chat - Advances in Cervical Cancer Treatment

We had sixteen participants join us for our final #gyncsm chat. We were pleased to have our community's long term supporter, Cervivor (@IamCervivor) as our guest. Thank you Morgan Newman for representing Cervivor. You may find the chat transcript here and analytics here. 

        T1: Before we dive into treatment advancements, let's cover some important                         #cervicalcancer basics: 

What are the current cervical cancer screening guidelines?

Did you know? New draft guidelines were published by the USPSTF this week. Check them out here:  https://www.uspreventiveservicestaskforce.org/uspstf/sites/default/files/file/supporting_documents/cervical-cancer-screening-draft-rec-bulletin_0.pdf. Stay informed and stay empowered!

Know your options! Some individuals may need more frequent screening or different tests. Talk to your healthcare provider about your individual needs!

 

What are the recommendations for receiving the HPV vaccine?

Get vaccinated! The HPV vaccine is recommended for all kids by age 11 or 12 (even as early as age 9), but adults up to 45 can also get vaccinated! 

Let's prevent #cervicalcancer together! 

T2: What are some of the recent advances in the treatment of #cervicalcancer in the areas of immunotherapy, targeted therapy, radiation therapy, etc?

Breakthroughs in #cervicalcancer treatment: Concurrent immunotherapy and chemoradiation improves survival for stage III-IVA disease

@ASCO  https://bit.ly/4iy0tG7. #Cervivor #immunotherapy

Targeted therapy is also making waves! New meds are targeting specific cancer cells, reducing side effects. Radiation therapy advances include more precise targeting and fewer sessions. #Cervivor #TargetedTherapy #RadiationTherapy

But that's not all! Other advances include minimally invasive surgeries, robotic surgeries, and new chemo combos. Treatment is always evolving and we are staying hopeful! #Cervivor #CervicalCancer

T3: Have there been advancements in the treatment of recurrent #cervicalcancer?

Recurrent #cervicalcancer treatment has new options! Immunotherapy, targeted therapy, and precision medicine are offering new hope. 

Clinical trials are crucial and often extend patients' lives! They offer access to the latest cutting-edge treatments. To patients on the fence, please ask your doctor about trials! #ClinicalTrials

But treatment isn't just about meds! Palliative care, pain management, and emotional support are vital to quality of life. Discussions on this have been becoming more visible which is important!

T4: How can #cervicalcancer patients stay up-to-date on the latest treatments and what is the best way to find a clinical trial? 

Our advice is to follow reputable sources like @NIH for the latest on #cervicalcancer treatments and clinical trials. Start a conversation with your care team to decide what's best for you! 

Did you know? https://clinicaltrials.gov is a comprehensive database of clinical trials for #cervicalcancer. Search by location, condition, or intervention to find trials near you.

Stay ahead of the curve! Join our community to connect with other #cervicalcancer patients, survivors, advocates, and experts. Share knowledge, resources, and support. #Cervivor

T5: What are the WHO initiatives regarding #cervicalcancer and global efforts to reduce disparities and eradicate cervical cancer? What can we do locally to reduce disparities?

The 73rd World Health Assembly adopted a global strategy to eliminate #cervicalcancer as a public health problem by 2030! 

 Goals: 

90% of girls vaccinated against HPV by 15 

70% of women screened by 35 & 45 

90% of women with pre-cancer/cancer treated

Did you know?

@WHO's Cervical Cancer Elimination Initiative focuses on improving access to life-saving services in low- and middle-income countries. Support global efforts to reduce disparities!

Local action = global impact! Join us in advocating for increased access to #cervicalcancer screening, treatment, and support in your community. Together, we can eliminate cervical cancer disparities.

T6: Please share #cervicalcancer resources that you have found helpful.

For some basics see the #gyncsm blog Resources section http://gyncsm.blogspot.com/p/resources_9.html

Empowered patients, empower their communities! Our website offers expert-approved info on #cervicalcancer diagnosis, treatment, and survivorship. Explore and share with your networks: https://cervivor.org.  Connect with others who understand! Our online community and support groups offer a safe space to share experiences, ask questions, and find support. Join us: https://cervivor.org/support/. Follow our social media for personal stories, expert insights, and updates on #cervicalcancer support programming, events, and advocacy efforts: https://linktr.ee/Cervivor.  JOIN US: at our upcoming Cervical Cancer Summit: https://bit.ly/3YQm8BB. #Cervivor #GYNCSM

@GYNCancer has good resources too https://foundationforwomenscancer.org/gynecologic-cancers/gynecologic-cancer-types/cervical-cancer/ resources available in Spanish too .

 

We ended our chat with thank yous:  

Thank you Christina @btrfly12 for being my partner. You are the absolute best chat moderator and community partner I could have asked for. 

We want to thank our current and former moderators: 
@ShannonWestin @NitaKarnikLee @DrBeckerSchutte and @journeycancer ( 2013-2020) Don S. Dizon, MD (2013-2015) @DrMarkham (2013-2018) @temkins (2018- 2022) 

Then #gyncsm community is grateful for the strong support of @subatomicdoc ,  @SGO_org,  @smart_patients and tonight’s guests Cervivor @iamcervivor

We can’t forget the social media gurus who we joined with to study hashtag communities including @subatomicdoc @pfanderson @audvin @mtmdphd Dr Deanna Attai and others. See studies and publications involving cancer hashtag communities: http://gyncsm.blogspot.com/p/publications.html

Thank you Teresa Hagan Thomas,  @UPMC @HeidiSDonovan @LHavrilesky , & Lauren Cooper Hand for working with us and publishing the studies on the needs of women w/ ovarian cancer, the needs of caregivers and PARP decision making http://gyncsm.blogspot.com/p/publications.html

We appreciate the numerous guests - individuals and organizations - who have shared their expertise on gyn cancers through the years. #gyncsm https://x.com/i/lists/197793

Thank you to the numerous #gyncsm patients, survivors, caregivers that have joined our chats the past 11 years. You are why we started this community. We hope we have provided a safe place to share, ask questions and learn.

Thanks to the countless gyn, med, & rad oncs, nurses, social workers, therapists and other health care providers who participated in the chats sharing knowledge. We appreciate the info you shared from @ASCO @SGO_org and other annual meetings.

A special shout out to all the researchers who have shared their published journal articles , answered questions and listened to the patients/survivors in our community.

You can continue discussing Cervical Cancer and other gyn cancers by joining Smart Patients at www.smartpatients.com/partners/gyncsm . Our blog  http://gyncsm.blogspot.com will remain open so that our community can have access to its resources and chat summaries. Dee will continue to share information using the #gyncsm hashtag and @gyncsm handle. 

Wishing wellness and safety for all. It has been an honor and a privilege to be in community with all our participants and supporters. 

Dee and Christina

Co-founder and Co-moderators #gyncsm chat 

FINAL #gyncsm chat December 11, 2024 - Cervical Cancer Advancements in Treatment

The #gyncsm community started in 2013 after both Christina and I took part in a #bcsm chat on dealing with recurrence. 

After eleven years, we have made the difficult decision to cease hosting the #gyncsm chat. Our last chat will be on Wednesday, December 11, 2024 at 8pmET with guest and long-time supporter, Cervivor (@IamCervivor).

Our decision is based on a number of reasons including the change in the X/Twitter platform since we held our first chat in 2013, the reduced number of chat participants - especially patients and survivors over the past year (see survey summary) - and the migration of health care providers, organizations, and cancer advocates like the Advocates for Collaborative Education (ACE) to alternate platforms. Dee will continue to use the #gyncsm hashtag on X. We hope that others will continue to use the #gyncsm hashtag to share research studies, research results, highlights from oncology meetings, and to connect with others. We will leave the @gyncsm profile page open on X but will not be updating it. 

We want to take this time to thank our current and former healthcare moderators:

Dr. Shannon Westin (2015-2024)

Dr. Nita Lee (2024)

Dr. Ann Becker-Schutte (2013-2024)

Dr. Sarah M. Temkin (2018-2022)

Dr. Rick Boulay (2013-2020)

Dr. Merry J. Markham (2013-2018)

Dr. Don S. Dizon (2013-2015)

 

We are also grateful for for the strong support throughout the years from Dr. Matthew Katz, the Society of Gynecologic Oncology/Foundation for Women's Cancers, Smart Patients, and Cervivor.

We thank the researchers including Teresa Hagan, Dr. Laura Harvelisky, and Dr. Lauren Hand who joined with us to learn about the needs of women with ovarian cancer, the needs of caregivers, and PARP decision making for patients. You can find those published articles here on our blog at http://gyncsm.blogspot.com/p/publications.html

We can’t forget to thank the social media gurus who we joined with to study cancer hashtag communities including Dr. Matthew Katz, Patricia Andersen, Audun Utengen, and Dr. Mike Thompson. Thank you! You can also find those articles here on our blog at http://gyncsm.blogspot.com/p/publications.html

We appreciate the numerous guests through the years who have shared their expertise on gynecologic cancers, as well as emotional and physical support topics. Thank you to the countless gynecologic oncologists, medical oncologists, radiation oncologists, nurses, social workers, therapists, and other health care providers who shared their knowledge and helped our community. We also appreciate the information you shared from ASCO, SGO, and other annual meetings. A shout-out to all the researchers who have shared their published journal articles, answered questions, and listened to the patients/survivors in our community

And finally we want to thank the the numerous #gyncsm patients, previvors, survivors, and caregivers that have joined our chats the past 11 years. You are why we started this community. We hope we have provided a safe place to share, ask questions, and learn.

We'll see you on December 11th for our final chat. Below are the questions that will guide our discussion:

T1: Before we dive into treatment advancements, let's cover some important #cervicalcancer basics: 

What are the current cervical cancer screening guidelines?

What are the recommendations for receiving the HPV vaccine?

T2: What are some of the recent advances in the treatment of #cervicalcancer in the areas of immunotherapy, targeted therapy, radiation therapy, etc?

T3: Have there been advancements in the treatment of recurrent #cervicalcancer?

T4: How can #cervicalcancer patients stay up-to-date on the latest treatments and what is the best way to find a clinical trial?

T5: What are the WHO initiatives regarding #cervicalcancer and global efforts to reduce disparities and eradicate cervical cancer? What can we do locally to reduce disparities?

T6: Please share #cervicalcancer resources that you have found helpful.

Dee and Christina 

Co-founders and co-moderators

University of Washington Ovarian Cancer Research Study - CHANCES

Dr Elizabeth Swisher at the University of Washington Fred Hutch Cancer Center and her team at the Swisher Lab are currently conducting a research study titled "Clonal HemAtopoiesis iN CancEr Survivors (CHANCES)” and is seeking participants. This study will help better understand the connection between ovarian and other solid cancers, its treatments, and the development of serious secondary cancers such as AML ( acute myeloid leukemia) and MDS (myelodysplastic syndrome). This study is funded by the National Cancer Institute.  

You are eligible to participate in the study if you live in the United States, have had recurrent ovarian, fallopian tube, or peritoneal carcinoma with any treatment history OR  a history of ovarian cancer (on or off treatment) who has any of the following:  

• Has been treated with more than 1 chemotherapy regimen (including if given for a different cancer type) or  
• Has received at least 4 months of a PARP inhibitor or  
• Has had low blood counts requiring referral to a hematologist for work up or  
• Had known MDS, AML or clonal hematopoiesis  

The duration of the study is 3 years.  You will be asked to complete a short survey every 6 months and provide one or more blood samples ( at a lab of choice near you) over 3 years. You will receive a $50 gift card after completion of 6-month questionnaire.  

Visit www.swisherlab.org/chances for more information about the study, eligibility, and the scientific team behind this research.

Please direct any questions to the Swisher Lab, via email (swisherlabrc@uw.edu) or phone (206-321-6648) . 

Please share this info with others who may be interested in participating in this trial. 

Dee and Christina 

Co-founders #gyncsm 

#gyncsm Survey 2024 Results Are In!

While the number of responses to this year's #gyncsm Survey was not as high as in 2019 (11 vs. 33),  Christina and I wanted to summarize the results and share them with the community. 

Of the eleven responses, the majority were gyn cancer patients, followed by caregivers, healthcare providers, a previvor, and cancer researcher. When asked what cancer diagnosis a patient/survivor/caregiver was dealing with the majority (6) were ovarian cancer, with one with endometrial cancer, one with vaginal cancer and one other cancer. Those who responded in the health care field represented cancer researchers, a therapist, a nurse and two in the other category. 

When asked how they found the #gyncsm chat and community, most responded that they stumbled upon it on X/Twitter while one responded they joined us from the Inspire(/OCRA) community. The eleven respondents participated in our community in the following ways: 

When asked if they visited our blog in the past year the majority of respondents read the blog post before or after the chat while others visited it to check the resources. Forty-five percent did not know we had a website/blog. 

When asked about the most important topics that we have covered in the past two years, Advocacy and Survivorship were the most popular topics while there were no choices for urogynecology . 

When asked how they used what they learned in our chats the majority shared that they advocated for themselves or their loved one, followed by recommending or using the resources we provided. The results for this question were similar to results from our 2019 community survey (see: 2020 ASCO Annual meeting survey results abstract https://meetings.asco.org/abstracts-presentations/187383). 

Suggested topic ideas for the future included:

• Finding clinical trials in your area 
• Cancer induced infertility
• PTSD and fear of recurrence
• Long term survivorship - is it Luck?
• How close are we to a screening test 
• Staging of disease - should it be revised
• Mental health 

Respondents preferred quarterly meetings at 8pm on the second Wednesday of the month.  Three respondents would like to see the #gyncsm community on Facebook. 

Thank you so much to all the survey participants for taking part in this survey and for everyone's continued support and use of the #gyncsm hashtag.  

See you in December when we chat about cervical cancer. 

Dee and Christina 

Co-moderators of the #gyncsm 

Sept 11, 2024 : So You Want To Be An Advocate - Personal, Legislative & Research

This month we celebrated our 11th anniversary as a community and chat on X. 

Christina and I appreciate the support provided to us by patients and caregivers, our health care moderators, advocacy and medical organizations, chat guests, researchers, social workers and navigators as well as. 

We were so pleased to have representatives from GRASP and OCRA join us as we discussed various types of advocacy from personal to research. You may find our transcript here and analytics here.

Here are some highlights from chat:

T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

• I advocate for gyn health by using/sharing resources from OCRA, like our educational materials and support services. Education empowers us to advocate for ourselves & our loved ones. Check out our site for resources for patients & caregivers: http://ocrahope.org/resources-support Advocating for your own health means being informed and proactive. Ask questions, share what matters to you, connect with knowledgeable communities, and seek second opinions when possible.
• I try - not always successfully - to write down my main concerns and questions before each appointment so I can get the most out of the short time in the visit.
• read up! Find research to answer potential questions, distill it to basics and ask doctors to explain it in context to the patient.
• Empowering patients is critical in shared decision making. Each patient is different and therefore recommendations should be tailored to each patients. Simplifying terminology to help patients and families understand diagnosis and treatment is a crucial first step.

T2: What are some tips and resources for being an effective advocate for yourself or your loved ones in the healthcare system? 

• Find the right online resources, connect with cancer organizations, and seek out others with similar diagnoses.
• A key to being your own best advocate? Be proactive! Know your health history, ask questions & seek second opinions if needed. Resources like OCRA’s "Find a Doctor" tool can help locate gyn-oncs, specialists & treatment centers in your area: http://ocrahope.org/resources-support/find-a-doctor
• Many of the disease organizations like @ocrahope @GYNCancer @CancerDotNet
  
• have Questions to Ask Your Doctor lists and other great resources. You are not alone and education helps empower. @ECANAwomen @SHARECancerSupt @ucan2020
• having a list of questions can be very helpful to guide the discussion and make sure all of your questions are answered; having something to take notes and refer back to, inviting a friend or family/caregiver to be an extra set of ears and review is also good.
• Patients are experts in their own bodies. If a patient or family member is concerned about a symptoms then we need to make sure those concerns are addressed. Always always always listen to the patient.

T3: What does being a "research advocate" involve? What are some of the ways people can get involved with cancer research - like grant review, clinical trials design, research dissemination, and/or conferences?

• Being a research advocate means bringing the patient experience into the research process. Your insight is invaluable. Get involved and make your voice heard.
• Being a research advocate involves providing patient insights into the experience of clinical trials. This can include making a trial easier to understand or improving patient feedback procedures. Connect with orgs like OCRA for opportunities: http://ocrahope.org/get-involved/volunteer-engage.
• Online training programs can help you start your journey as a research advocate. Learn the science, but remember: YOU are the expert in your experience.
• Want to get involved in cancer research? Start by connecting with organizations like GRASP that offer training and opportunities to collaborate with researchers
• #gyncsm did a past chat with
• @RANAdvocate
• focused on Research Advocacy - here's the recap with some info and links: http://gyncsm.blogspot.com/2016/12/getting-involved-in-research-advocacy.html
• There are multiple organizations where patient advocates can get involved in research including
• @NRGonc You can also talk to your doctor. Patient voices & community perspectives are essential in research. Working together to improve patient outcomes and experiences.
• Coursera offers a great program on the biology of cancer.
• @AACR has a Scientist to Survivor Program
• Reach out to the Advocate collaborative @AdvocateCollab http://advocatecollaborative.org A great group for support, education and information.
• consider talking to your own Onc team- many GYN oncologist are involved in research and could potentially use a patient advocate on their teams! @NCIResearchCtr NCI designated Cancer centers often have community and patient research advocacy options for engagement!

T4: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

• OCRA is the largest charity in the world devoted to ovarian & related gynecologic research, having invested $122 million to date. Keep up with the impact, results, and major breakthroughs of this research and learn more about our grantees here: http://ocrahope.org/research/impact-results
• There are a number of groups that share information in lay terms. @theNCI
• has a glossary https://cancer.gov/publications/dictionaries/cancer-terms. You don’t need to understand all of it. But you are the expert. 
• I signed up for emails from @CancerNetwrk and also keep up with@ASCOPost . Their summaries of the journal articles are well written for a general audience to understand. 
• More and more healthcare conferences do include patient advocates and can be a great experience. And organizations like @ocrahope @gyncancer @facingourrisk have conferences just for patients
• Of course, follow the #gyncsm on X during the @ASCO @SGO_org @IGCSociety @myESMO
  
• annual meetings and you will learn the latest research being presented. And it is OK to ask questions of the poster if you don't understand the research.
• Follow gyn onc groups on social media, podcasts, conferences. There are special rates and many times there are funding sources to help patients and advocates attend conferences.
• #gyncsm following major organizations can help pts explore research and consider opportunities for engagement at meetings @GYNCancer @SGO_org @IGCANetwork
• Join the SGO, FWC and ASCO. These organizations are great with providing up-to-date info. Conferences are also a great way to stay informed."
• @MedicalwatchBCMedWatch has a newsletter you can sign up for specific gyn cancers news https://medical.watch

T5: What are some tips when it comes to reaching out to Congress or your local legislatures about cancer research? What has shown to be effective?

• @CancerAdvocacy just posted today about applications for their Cancer Policy & Advocacy Team (CPAT) https://canceradvocacy.org/get-involved/cpat/
• When reaching out to legislators, be clear/specific, provide personal stories and data to illustrate impact, and follow up consistently. Build relationships and participate in advocacy events, such as OCRA’s Advocacy Day. Learn more here: http://ocrahope.org/advocacy/become-an-advocate
• Want to be more involved year-round? OCRA’s Advocate Leaders program trains/supports advocates across the country to develop relationships w/ elected officials & fight for expanded federal resources. Applications for the 2025 cohort open Sep 25 http://ocrahope.org/advocacy/become-an-advocate/advocate-leaders
• @HealthUnion has a wonderful blog with many relevant topics for healthcare advocates: https://socialhealthnetwork.com/stories/advocacy-compensation-tips     https://socialhealthnetwork.com/guest-expert/the-evolution-of-health-advocacy
• I have worked in politics most of my career. I have worked in a Congressional district office. Familiarize yourself with your elected officials local, state, and national. From that perspective when there is legislation that impacts cancer patients send your member a personal message explaining why you are for or against it. Make sure to mention you are a constituent. That is taken much more seriously than a petition with lists of names. There is much more you can do, but that is by far the easiest way to engage with your elected officials.

T6: For gynecologic cancers, what are the barriers in raising awareness and advocating for improvements in care? What issues do you think it's important for the #gyncsm community to advocate around? 

• Barriers to raising awareness include lack of education & limited funding. Advocating for improved care involves addressing gaps in research & funding for gyn cancers, as well as disparities in access to quality care. Join the fight/take action http://ocrahope.org/advocacy/sign-up-for-action-alerts #
•  reach out to your local state legislators from your own district, find out if they have a cancer caucus #gyncsm Consider aligning with larger organizations such as @ASCO @SGO_org @ACSCAN
• I feel like things have come a long way in terms of the stigma of "down there" cancers. That lays the foundation to spread even more education. Thanks to everyone who is using this awareness month to spread #gyncsm facts and information.
• Spreading the word about gyn cancers during #GCAM has become easier and I love the teal ribbons but knowleddge about rarer type of gyn cancers , clear cell OC, Low Grade , Vulvar, Vaginal in the general public is still low. Education is key.
• barriers and disparities along race, ethnicity geography and SES are along the whole continuum of care in #hpvvaccine #genetictesting #access to GYN oncologists; #Clinicaltrials
• I think more awareness of hereditary mutations that lead to gyn cancers needs greater awareness. Impact on family - daughters AND sons is so important. #gyncsm
• T6: Spreading information. Addressing misinformation. Discussing HPV vaccination. Evaluating post menopausal bleeding. Cervical cancer screening. Talking about signs & symptoms of cancer. Financial investments in research. We have come a long way but have a long way to go
• #gyncsm addressing barriers, also means ensuring that there is diversity and representation in all forms of advocacy, including research advocacy. @BCancerCollab1 @KDRichardson924 is a leader in this space!  

We invite you to help us plan future chats by taking our community survey at https://forms.gle/4vABT5nt4RqbVR8x5 . The Survey is open until Sept 30, 2024. 

Remember you can continue our discussion about advocacy on @smart_patients by joining Smart Patients at https://www.smartpatients.com/partners/gyncsm .

See you in December when we are joined by Cervivor to discuss Cervical Cancer. 

Dee and Christina 

Co-moderators