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

Endometrial Cancer #gyncsm Chat August 12, 2020

 

Join the #gyncsm community on Wednesday, August 12th at 9pmET / 8pmCT as we discuss Endometrial Cancer - Risk, Symptoms, Treatments along with special guest Adrienne Moore @AdrienneEcana who is a survivor and patient advocate.

Topic Questions for Wednesday's chat:

T1: What increases a woman's risk of developing #endometrialcancer? Age/Genetics/Other Factors? How common is endometrial cancer and how aware are women about it? #gyncsm

T2: How are cancers of the uterus diagnosed? What symptoms are women experiencing that lead to diagnosis? #gyncsm

T3: What are the different types of #EndometrialCancer? Are they treated differently? #gyncsm  

T4: Studies have found African-American women experience higher mortality from #endometrialcancer than any other group of women. What factors are researchers looking into to explain and address this disparity? #gyncsm

T5: What are the side effects of #endometrialcancer and its treatments that may impact a woman’s quality of life? What can be done to improve the lives of women diagnosed with endometrial cancer? #gyncsm

Here are some Endometrial Cancer resources and we hope to see you at the chat.

Uterine/Endometrial Cancer:

• NCCN Guidelines for Patients - Uterine 
• NCI Uterine, Endometrial - https://www.cancer.gov/types/uterine and https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq
• NCI Uterine, Sarcoma - https://www.cancer.gov/types/uterine and https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq
• Foundation for Women's Cancer (2017): Endometrial Cancer- Your Guide
• Peach Outreach
• Uterine Cancer Awareness Network
• ECANA: Endometrial Cancer Action Network for African-Americans 
• Foundation for Women's Cancer Uterine Cancer Survivors Course 2013 - Videos
  
• Rare Forms:
• Uterine Carcinosarcoma/MMMT http://gcsproject.org/carcinosarcoma-facts/
• Endometrial Stromal Sarcoma http://ess-sarcoma.com/
• Leiomyosarcoma: http://lmsdr.org/ and http://nlmsf.org/
• Sarcomas Overall: https://sarcomaalliance.org/ and https://www.curesarcoma.org/ 

Christina, #gyncsm co-founder

 

August #gyncsm Chat - "You never heard of Primary Peritoneal Cancer or GTDisease?"

In the past three years we have hosted chats dedicated to a number of the different gynecologic cancers - Cervical, Endometrial/Uterine, Fallopian Tube, Ovarian, Vulvar and Vaginal. This month we are going to discuss two more of the rare gynecologic cancers - primary peritoneal and GTD (Gestational trophoblastic disease).

What are these cancers?

Primary Peritoneal Cancer (PPC) forms in the peritoneum (the tissue that lines the abdominal wall and covers organs in the abdomen), and has not spread there from another part of the body. Primary peritoneal cancer sometimes spreads to the ovary. It is similar to ovarian epithelial cancer and is staged and treated the same way.
-NCI Definition

In data from 1995-2005, Goodman* found that the incidence rate in the U.S. for PPC was 6.78 per million women compared to 119 per million for ovarian cancer. Women with PPC were diagnosed at a later age (mean 67 years) than ovarian cancer (mean 63 years). (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706690/)

GTD (Gestational trophoblastic disease) is a rare condition in which abnormal cells grow inside the uterus from tissue that forms after conception (the joining of sperm and egg). This tissue is made of trophoblastic cells, which normally surround the fertilized egg in the uterus and help connect the fertilized egg to the wall of the uterus. These cells also form part of the placenta (the organ that passes nutrients from the mother to the fetus). Most GTDs are benign (not cancer) and do not spread, but some types are malignant (cancer) and spread to nearby tissues or other parts of the body. The two main types of GTDs are hydatidiform mole and choriocarcinoma. Also called gestational trophoblastic disease, gestational trophoblastic tumor, and GTT.
-NCI Definition

GTD occurs in 1 out of 1000 pregnancies in the US. It less than 1% of all gynecologic cancers. GTD is more common in Africa and Asia than in North America. (http://www.cancer.net/cancer-types/gestational-trophoblastic-disease/statistics)

You can learn more about GTD or Primary Peritoneal Cancer by joining our chat and reading these pages on the NCI website.

• GTD https://www.cancer.gov/types/gestational-trophoblastic/patient/gtd-treatment-pdq
• Primary Peritoneal Cancer is treated like ovarian cancer and is included with the NCI Ovarian cancer information. https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq

You can also read a GTD survivor story here on our blog:
http://gyncsm.blogspot.com/2015/04/survivors-story-gtd-and-me-story-of.html

Part of #gyncsm's mission is to support those impacted by all gynecologic cancers. One way we can do this is to offer information on rare gynecologic cancers and support survivors of those cancers. #gyncsm will be participating in the #Dazzle4Rare social media campaign during August 13-19. Check out that tag to learn more about rare disease and share your own story.

We hope you will join us as we raise awareness of the risks of these rare gynecologic cancers, support the women impacted by them, and support the clinicians and researchers who focus on treating these rare cancers.

We look forward to chatting with you on Wednesday, August 9th at 9pm EST (8pm CST/ 6pm PST).

Guiding our discussion will be the following topic questions:

T1: What is Primary Peritoneal Cancer (PPC)? Why is it treated like ovarian cancer?

T2: Are there risk factors and symptoms of Primary Peritoneal Cancer (PPC)? Is there a known genetic mutation that increases risk?

T3: What is Gestational trophoblastic disease (GTDisease)? What types of GTDisease are there? Are they all malignant?

T4: What are the risk factors and other important things to know for GTDisease? Is there a known genetic mutation that raises risk?

T5: Are there any special support services for these two rare cancers? Where can people learn more?

Dee
Co-founder #gyncsm

*Goodman Study

Sarcoma Awareness Month - Add your support

Guest post by patient advocate Suzie Siegel (@SuzieSiegel)

Many women never hear of sarcoma until they get it.

Sarcoma Awareness Month can teach women about rare gynecological cancers — then give them hope and resources to survive.

The National Cancer Institute, the American Society of Clinical Oncology, the American Association for Cancer Research and the American Cancer Society all recognize July as Sarcoma Awareness Month.

But the White House and Congress have never made it official. Once again, sarcoma nonprofits have a petition going, and we would love to have your help. 

Please add your name to the petition to officially designate July as 

Sarcoma Awareness Month: 

https://petitions.whitehouse.gov/petition/officially-designate-july-sarcoma-awareness-month

Sarcoma is a cancer of muscle, bone and other connective tissues. It represents 20% of childhood cancer cases but only 1% in adults. It can arise anywhere in the body at any age, from newborns on up.

In women, sarcoma can occur anywhere in the reproductive tract although the uterus is the most common. The different types are:

1.     Carcinosarcoma (formerly known as malignant mixed mullerian tumor or MMMT). Sarcoma specialists often don’t consider this a true sarcoma.

2.     Leiomyosarcoma. The Cancer Genome Atlas is expected to separate gynecologic leiomyosarcoma from LMS found elsewhere in the body.

3.     Endometrial stromal sarcoma. It has been divided into low-grade, high-grade and undifferentiated uterine sarcoma.

4.     Adenosarcoma.

5.     Embryonal botryoides or rhabdomyosarcoma found in infants.

6.     PEComa.

Risk factors include previous pelvic radiation and use of Tamoxifen.

Women often are diagnosed first by an OB/GYN and may then be referred to a gynecologic oncologist. Many also choose to see a medical oncologist who specializes in sarcoma, too.

Sarcoma nonprofits can help women find specialists as well as financial and emotional help. Let us help you!

—————

I’m a 15-year survivor of metastatic leiomyosarcoma that started in my vagina and spread to my right lung. I volunteer for the Sarcoma Alliance, Sarcoma Foundation of America, Imerman Angels and MD Anderson Cancer Center’s MyCancerConnection. You can contact me at suziesiegel@tampabay.rr.com

Suzie Siegel is pictured here at SGO 2017 with Dr. Don Dizon
at her table for the Sarcoma Foundation of America

Our Community - 2016 Survey Results

During September and early October we conducted a #gyncsm community survey. We were so pleased that 84 individuals took our survey. This is up from 37 respondents who completed our 2014 #gyncsm survey. We very much appreciate those who took the time to share their ideas and recommendations. Below are some highlights of the results.
 
The majority of survey respondents were Gynecologic Cancer Patient / Survivors (70.0%) followed by High Risk Individual or Advocate / Previvor (12.5%), Health Care Provider (11.25%), Caregiver / Loved One of a gynecologic cancer patient / survivor (10%) and lastly Cancer Researcher (5%).

The patient / survivor breakdown was:

• 46.8% ovarian
• 34.3% endometrial/uterine
• 14.0% cervical
• 8% fallopian, primary peritoneal, vulvar or GTD
• 0% vaginal
• 7.8% breast

Of the health care professionals who filled out the survey, the majority were nurses (42.8%) or gynecologic oncologists (28.5%). The remaining health care professionals were medical oncologists, radiation oncologists, researchers or genetic counselors.
 
We were interested in how followers interacted with the #gyncsm hashtag, chats and community. 43% of the respondents read the chat blog posts, 43% retweeted using the hashtag, 36% took part in a chat, 38% tweeted using #gyncsm, and 27% read a chat transcript. Less than 10% of the respondents joined us on Smart Patients platform. When asked specifically about our blog site, we found that 50% of the respondents visited our blog.

We asked which of the topics covered over the past three years were most important and these were the top five topics for survey respondents:

1. Survivorship
2. Advocacy
3. Side Effects
4. Personalized Medicine
5. Clinical Trials and Support

When asked how they used the information from #gyncsm chats after the chat, the top response was advocating for themselves or others (58%). Also of note, 29% took part in an online support group and used a resource found in our blog posts. 

 
When we asked how we can better help the community and what topics we should discuss, here's some of what we learned:

• Sometimes the time is either too early or too late.
• Sometimes the chat is too quick for a meaningful discussion.
• We should highlight other gyn cancers - endometrial/uterine, cervical were mentioned in particular. Continue to talk about clinical trials and genetics.
• Talk about health care disparities and outcomes for women of color.
• Talk about dealing with grief from the loss of friends.
• Talk about sexuality after treatment.
• Talk about what is important to younger patients.

We also asked respondents to share their thoughts on our #gyncsm chat/community and how it has has impacted their attitude toward their own health. Some of the things we heard are that #gyncsm provided:

• Hope.
• Made me feel part of the community.
• Encouraged me to take more ownership in my own preventive health and advocacy for others.
• Appreciate the range of resources offered.
• Feel more empowered, less alone.
• Led me to follow up more on some of my side effects and secondary challenges.
• Wish #gyncsm could be leveraged into a new non-profit for all GYN cancers.
• I felt like I was alone... there were no support groups near me. #gyncsm made me feel a part of a community.

But we also heard:

• It is challenging for the hashtag to cover both advocacy/activism AND patient/survivor support - this is a common problem with other disease hashtags.
• There needs to be more equal support for other cancers.

Lastly we wanted to know how individuals find out about #gyncsm. Respondents found us via:

• Twitter
• Other cancer chats
• Facebook
• Dee's Blog
• From a friend
• Researching cancer
• Followed @btrfly12
• NED twitter handle
• Randomly found the #gyncsm chat
• Smart Patients

Thank you to all who took this survey and for your continued support. We are using the information from the survey as we make our plans for next year. Remember if you have any other comments or concerns feel free to reach out to gyncsm@gmail.com.

Dee
#gyncsm Co-founder