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

Palliative Care- When and Why - May 2018

For this month's chat, Palliative Care - When and Why, we welcomed guest Christian Sinclair (@ctsinclair), a palliative care and hospice physician, editor of Pallimed and founder of the #hpm community on Twitter. Fifty-four participants made over 2.3 million impressions during the hour chat. You may find more analytics here and the transcript here.

Here is a sampling of responses. Please scroll down for Resources. 

What do you think of when you hear the term "palliative care"? What does it mean to you?

• PalliativeCare is symptom management offering emotional support, to patient and family. At any time during Cancer dx not just eol.
• Living life on your terms with the help of team of healthcare professionals who support the patient and family
• Palliative care-I think of a critical piece of overall care during serious illness, pain, and end of life.
•  I think of palliative care as an opportunity for someone to receive whatever support (pain management, counseling, home care, accessing info/resources, etc.) they may need when progressing through a health problem that may be life limiting #gyncsm
• Palliative care should be available at any age and any stage. The goal is support. 
• We #hpm docs spend quite a bit of time clarifying perceptions of the field (ie. its not just end of life care). Our #PalliativeCare thermometer highlights the domains of a person's care that may be of importance to them! #Palliative Care is whole person care!

This first question also began a discussion regarding the term "Palliative care". Some felt that the term may actually turn patients off from getting the care they need. Some centers use the term Supportive care. Sinclair responded "There are lots of debate inside and outside the palliative care community about finding the best name. Ultimately it comes down to organizational/community culture, and making sure the clinicians feel comfortable introducing the concept as concurrent, not either/or".

When do cancer patients tend to get referred to a palliative care specialist? Do you find this to be a tricky conversation? Patients - Did anyone on your care team discuss palliative care with you?

• ASCO recommends PalliativeCare is offered within 8 weeks after dx
• We are seeing more family and patient-initiated #pallaitive care referrals. As they realize they can have more support, they are starting to ask for it and our oncologists are open to collaborating with us. Caveat: I am in an academic med center in a metro area.
• Patients with advanced cancer should be referred to #pallativeCare early and it should be an integral part of treatment, not just something added on near the end of life
• I see them referred too late. Palliative care is still associated with end of life & have been told “they aren’t ready for that”. Who’s not ready for patient centered care that views the whole person not the illness & manages all symptoms physical, emotional, etc.?!

Why is knowledge of and access to palliative care throughout cancer treatment important? Does Medicare/Insurance cover palliative care? Are there specialists in rural areas?

• For this chat I found this @ASCO Connection article : Telemedicine has been used for those in rural areas.https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation
• Looking at symptom management by a specialist in the field offers a complementary approach to managing the disease itself by treating the patient as a whole being. Services are covered but often require copay. Rural areas often lack service
• Medicare covers PalliativeCare for symptom management in some extent Improving Quality of Life and prolong survival.
• #Telehealth show great promise is rural settings, along w/ patients' willingness to engage. Telehealth reduce travel needs, removing physical and financial burdens associated with travel. Telehealth utilization for #pallativeCare is emerging rapidly

What are medical and advocacy organizations doing to promote palliative care for cancer patients? How can patients advocate for themselves?

• NCI, NHPCO. SWHPN. GetPalliativeCare. org Be more proactive
• I do appreciate the statement from @SGO_org on the importance of #palliative care in #gyncsm #openaccess https://www.sgo.org/wp-content/uploads/2015/05/Palliative-Care-published-May-2015-Gyn-Onc.pdf
• Random, but I tell patients to grab one of every brochure at their Onc office and look through to find the things you might need and then ask with the brochure. It’s crazy how many supports exist that I’ve only found out about that way. They always make a brochure!

What do you wish you knew about palliative care at the beginning of your experience with a cancer-related diagnosis? For those who have worked with a palliative care specialist, what was most helpful? most challenging?

• I think more and more patients appear to be more empowered to not just get the latest greatest cutting edge research treatment, but to make sure they get all their needs met. Aiming for whole person care. To be fair though, advocating for yourself is really hard work
• Considering how much time we have to spend talking through acute issues with my GynOnc since I’ve been terminal, it’s not surprising we don’t talk about palliative care. I’m focused on getting more Oncs to have this talk when cases aren’t as complicated.
• I wish I had known when my dad was diagnosed that pts in #palliativecare can still go to PT and OT to help them gain the strength to return home for EOL. It would have saved so much pain for him while he tried to get strong enough to return home.

If you are a caregiver or patient you may continue this discussion online on the Smart Patients platform at https://www.smartpatients.com/gyncsm .

Be sure to check our resources below.

Join us next month on June 9th for Let's Discuss Value of Care.

See you then.
 
Dee
#gyncsm Co-founder

Resources
Perceptions of #palliative care by people with adv cancer and their caregivers
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938707/

Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center.
https://www.ncbi.nlm.nih.gov/pubmed/21212438

Predictors of high symptom burden in gynecologic oncology outpatients: who should be referred to outpatient palliative care?
https://www.ncbi.nlm.nih.gov/pubmed/24472408

Practice Patterns, Attitudes, and Barriers to Palliative Care Consultation by Gynecologic Oncologists. https://www.ncbi.nlm.nih.gov/pubmed/28783424

Economics of Palliative Care for Hospitalized Adults With Serious Illness https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2678833?utm_source=twitter&utm_campaign=content-shareicons&utm_content=article_engagement&utm_medium=social&utm_term=050818&redirect=true#.WvJSZ-FbZeU.twitter

Palliative Care in the Global Setting Resource-Stratified Guideline
https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/supportive-care-and-treatment-related-issues?et_cid=40284775&et_rid=977394059&linkid=Palliative+Care+in+the+Global+Setting%3a+A+Resource-Stratified+Guideline_link#/31016

@theNCI Palliative Care in Cancer Care
https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

@Cancerdotnet Caring for the symptoms of cancer and its treatment
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care/caring-symptoms-cancer-and-its-treatment

@SGO_org
https://www.sgo.org/newsroom/position-statements-2/delivery-of-palliative-care-services/

Dana Farber
How Does Palliative Care Help Cancer Patients? | Dana-Farber ...

ASCO Connection: Telemedicine in Palliative and Supportive Care: A Continuing Conversation
https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation

Links to Palliative Care Graphics Shared:
https://twitter.com/skochb/status/994387131161366528
https://twitter.com/IshwariaMD/status/994387821770297344
https://twitter.com/IshwariaMD/status/994388792747360256

https://twitter.com/skochb/status/994387131161366528
https://twitter.com/skochb/status/994387131161366528
httpwitter.com/skochb/status/994387131161366528