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

Survivor Stories: No Christmas Tree for Christmas - Patti Murillo-Casa

As January,  Cervical Cancer Awareness Month, draws to a close we are pleased to bring you the story of Cervivor Patti Murillo-Casa. Thank you Cervivor for allowing us to share stories from your website this month. 
Dee

No Christmas Tree for Christmas

Ever since I can remember, Thanksgiving, Christmas, and New Year’s has been a special time in my family. It’s filled with traditions, love, being grateful, and always feeling blessed and thankful for everything. We celebrate by being together, giving each other gifts, serving delicious food, and of course always having a beautiful Christmas tree.

In the year 2008, these holidays were very different – I was shocked beyond belief when my doctor gave me a cancer diagnosis. That particular moment is vivid in my mind, but the moments after the words “You have stage IIB cervical cancer” are a blur.  It was mid-November, right before Thanksgiving, Christmas, and New Year’s.

Needless to say, I wasn’t in the spirit for any of the holidays after receiving such a diagnosis. Everything had gone dark. I thought, “Thanksgiving??? What do I have to give thanks for? For having cancer?” Focused only on the words of my doctors, I was forgetting about the rest of the many blessings around me. I was giving up before I even started to fight back. For me, it was the beginning of the end.

I went into a cocoon, asking myself over and over, “What did I do wrong to deserve this?” I didn’t want to see anyone, not even family or friends. That year, there was no giving thanks on Thanksgiving, no beautiful tree or gifts for Christmas, no party or champagne cheers for the New Year. What was the sense of doing all that if I felt uncertain about my life? I was facing my own mortality.

It took a while for me to feel ready to fight back. I was fighting for my life, and I was really scared. I even questioned my own faith, but God gave me the support and strength to endure. It was a difficult journey, but I won the battle – I got a second shot at life.

Now, I don’t question anything. I give thanks every day as if it were Thanksgiving Day. I celebrate each day and see it as a gift given to me like a Christmas present. I live and celebrate every day as if it was New Year’s day. There is so much I want to do, and I don’t take anything for granted. I see life differently now; problems that seemed huge are not so big anymore, and I really don’t sweat the small stuff. Life is good!!

After going through this experience, I want to share my story with other women and let them know that my journey does not have to be theirs. I want to pay it forward.

In 2014, I was fortunate to have been chosen as one of the survivors to attend Cervivor School. This is a life-changing event that trains women in impactful storytelling, teaching the most essential facts about HPV, cervical cancer, and prevention. Cervivor School supports women in becoming cervical cancer advocates and changing the future of female health.

I had an awesome experience at Cervivor School 2014, becoming empowered with knowledge in so many different areas. The support of my survivor sisters is beyond anything I could imagine, and I’m now a SURVIVOR turned ADVOCATE, committed to helping eradicate cervical cancer for good!

I want you to know that you can get through this, and we are here for you. Together, we’ll make a difference.

~ You gain strength, courage and confidence by every experience in which you really
stop to look fear in the face. You are able to say to yourself, “I have lived through this horror. I can take the next thing that comes along.” You must do the thing you
think you cannot do.  ~ Eleanor Roosevelt 

Wishing Everyone a Very Healthy New Year 2015!!

Cervivor Patti Murillo-Casa

Survivor Stories: How A Diagnosis of Cervical Cancer Changed My Life - Tamika

This month, Cervical Cancer Awareness month, we are pleased to share the stories of cervical cancer survivors. We begin with the story of  Tamika Felder, survivor and founder of Tamika and Friends and Cervivor. More information about cervical cancer and HPV can be found on the organization's websites. - Dee

How A Diagnosis of Cervical Cancer Changed My Life 

When I was diagnosed with cervical cancer, I never planned on becoming a patient advocate. In fact, it was the furthest thing from my mind.

I was 25, single, childless and scared. This was 2001 and no one was really talking about HPV. I had never even heard of it and I pride myself with being “in the know”. Hell, I was even working on a national award winning health show and it wasn’t a topic that we discussed.

As I healed from my surgery and prepared for radiation and chemo I still never thought about sharing my story. It’s ironic, because as a television producer that’s what I am – a glorified story teller. But this wasn’t a story that I wanted to share.

I was ashamed and just wanted to put it all behind me.

So I did. Or at least I thought I did. Slowly, I began pouring myself back into my work and started the grind of networking. I went back to being that social butterfly that my friends and family had always loved.

But something was different. I was different. My life had forever been changed. As much as I tried to put the pieces of my cancer riddled life back together, it just didn’t happen. The pieces no longer matched up perfectly. I didn’t fit into my own world. My energy level wasn’t the same and I thought about my experience constantly. I wondered why no one was talking about cervical cancer.

It took me three years to accept that I had cancer and it had rocked my perfectly planned world. I was one of those people who had everything planned out and cancer was not in the plans – when is it ever? But it happened and thankfully I survived — so I had to live — really live.

And so I did. Part of living my best life after cancer was doing something for those that would come after me. Like helping them to avoid the isolation that I felt as a woman with cervical cancer.
The more involved I became in the cancer community, the more the pieces of my life began to fit back together – but some of them took a new form.

When I look at the cervical cancer community, I see only a handful of women sharing their stories. I always wonder why more women aren’t speaking up. Is it because of the stigma of HPV? A lack of time? Or do they think that their voice doesn’t matter?


Whatever the reason; we need your voices. 

Tell me: What’s holding you back from sharing your story? We need patient advocates to help combat this disease. We can’t leave it to the clinicians and researchers and Congress. We must have a seat at the table. We complete the puzzle to eradicating this disease. We are the messengers. Will you join me?

I won’t stop until we put an end to this cancer – because together, I know that we can.

Tamika

This post originally appeared on the Cervivor blog. Re-posted with permission.