Our 2nd Anniversary Chat 9/9/15 : GCAM and a Spotlight on Uterine Cancer

Christina and I want to thank our health care moderators, supporters and chat participants for being a part of the #gyncsm community. This month marks our Second Anniversary and we would not be an active vibrant community without your help and support.

This month we will be talking about Gynecologic Cancer Awareness Month and will also chat about uterine (endometrial) cancer. We are pleased to be joined by Lynne Braden (see her story here on our blog), uterine (endometrial) cancer survivor and founder of GynCAN (Gynecological Cancer Awareness Network). We are also pleased to be joined by Carrie Oliveira, uterine (endometrial) survivor and founder of The Iris Foundation.

The questions guiding our chat include:

T1: Let’s start with Gyn Cancer Awareness Month #GCAM. What do you wish others knew about your gyn cancer? What are some key points?

T2: Share ways you are raising awareness during #GCAM, everything small to big. Let's replicate great ideas and amplify the message!

T3: What are the #uterinecancer #endometrialcancer risks and symptoms? Survivors, what symptoms did you experience? How diagnosed? 

T4: What treatments are used for #uterinecancer #endometrialcancer? Which side effects have the biggest impact?

T5: Why do you advocate for yourself and others? How has your life changed because of a gyn cancer diagnosis?

For more information about uterine (endometrial) cancer, please view this video by the Foundation for Women's Cancer.

We hope you can join us on September 9, 2015 at 9pm EST.

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Dee
Co-Founder / Co-Moderator #gyncsm

Survivor Story: Lynne, The Impact a Movie Can Make

During Gynecologic Cancer Awareness Month (GCAM), we are pleased to share the story of Lynne Braden an endometrial (uterine) cancer survivor who has founded the Gynecologic Cancer Awareness Network (@GynCAN, #GynCAN). We urge you to check the sites mentioned in her story.

Lynne's Story

In early 2015, I was enjoying my second year of early retirement traveling North America as a full-time RVer and travel blogger (http://winnieviews.blogspot.com).  After my mom died of breast and lung cancer in 2013, I had quit my job, rented my house, and sold all my possessions to start living the life of my dreams while still young and healthy enough to enjoy it.

In April, 2015 while in New Mexico, I happened to watch the documentary No Evidence of Disease on PBS one night. An old classmate of mine had died of cervical cancer a few months earlier, and the film's subject matter immediately held my attention.

The film provoked my curiosity afterwards to search online for the early warning signs of Gyn cancers. Suddenly, that annoyingly regular little bit of spotting and discharge I'd been experiencing the past few months took on much greater significance-- it was a common symptom for various Gyn cancers! I called to make an appointment the very next day with a local OB/Gyn.

Within 2 weeks of watching the NED movie, I was diagnosed with Endometrial (Uterine) Cancer, and began a rapid cross-country RV trek back to my hometown of Chicago for treatment by a skillful and fabulous Gynecologic Oncologist at a full-service hospital and cancer center.

Even though I’d spent my career working in hospitals and physician practices as a healthcare software project manager, I’d never had surgery before and had never been a hospital patient.  When my Gyn Onc talked me through what the Da Vinci robotically-assisted Hysterectomy/BSO surgery would entail, the tech geek in me couldn’t wait to run home that night to search out a YouTube video of the surgery! (for me at least, it actually was quite helpful to watch and greatly relieved my pre-surgery fears).

While the surgery went well, and initial pathology confirmed that the tumor was fully contained in the uterus, my Gyn Onc was concerned about the abnormal-looking lymph nodes she removed.  If final pathology would show cancer spreading to the lymphatic system, my road ahead would be far more difficult and unpredictable.

Those couple of days of waiting for the final pathology report gave me a potent reminder to never underestimate the power and impulsiveness of cancer.  I vowed from then on that I would never assume to have the upper hand on cancer or not take it completely seriously, no matter how “win-able” the survival stats may be.  I would also make those necessary, but long-ignored, diet and exercise changes to get my body back to a “healthy fighting weight.”

To my great relief, 2 days later, the pathology on my lymph nodes came back negative.  My cancer would be staged at 1A after all (instead of 3C).  But due to the size of my tumor (4 cm), putting me at slightly higher risk of recurrence, my Gyn Onc recommended 3 quick sessions of internal radiation (vaginal brachytherapy) to lower my risk.  

Within a few more weeks, I had completed treatment and recovered from surgery without any complications or long-term side effects.  All things considered, round 1 of my cancer battle was “easy/breezy” compared to most.

A few weeks after surgery, I learned that the N.E.D. band (the 6 gynecologic oncologists who were the subjects of the No Evidence of Disease movie) would be playing a benefit concert in the IL/IA Quad Cities less than 200 miles from me.  I just had to go meet them and thank them personally for, essentially, saving my life!

It was a transformational evening.  Not only did I meet the band & love the music, but I also met 2 dozen other GYN cancer survivors.  Many of their stories (and their much more difficult cancer struggles) touched me profoundly.

On the drive back to Chicago, I began to think of how I might turn my blogging and social media interests (and desire to improve my physical fitness), into something that might benefit gynecologic cancer awareness and raise funds for further research and education in the process.  

With the help of the social media directors of the N.E.D. band, and the Foundation for Women’s Cancer, in August, 2015, GynCAN (the Gynecologic Cancer Awareness Network) was launched -- an online grassroots community of survivors, family, friends, and medical folks committed to spreading awareness using the power of each of our various social media networks.

During September’s Gynecologic Cancer Awareness Month, we will post daily to our various blogs and social media sites using the common hashtag of #GynCAN to pool our posts together and make some noise to raise greater awareness.  If you are active online, join us!

Additionally, those who are able will walk/run 100 miles in September (3.3 miles per day) as part of the #GynCAN100 and ask our friends/followers to donate on our behalf to the Foundation for Women’s Cancer.

While the circumstances that bring us together have not been wished by any of us, we will not quietly suffer our “below the belt” cancers without a good LOUD fight, and will pray that our efforts to raise awareness will ultimately help many thousands of women avoid/survive these cancers in the years to come!

Lynne Braden

Gynecologic Cancer Awareness Network 

#GynCAN

Thank you Lynne for sharing your story. Thanks also for being a guest at our 9/9 #GynCSM chat.

We are saddened to report that Lynne passed away in May 2018. We are happy that she shared her story and insights with the #gyncsm community. 

Dee

Co-Founder, Co-Moderator #gyncsm 

If Only I Knew - September is Gynecologic Cancer Awareness Month

Ten years ago I didn’t know very much about the color teal or ovarian cancer. I did go for an annual Pap Test but that was the extent of my knowledge of gynecologic cancers. Since my sister had been diagnosed with breast cancer at the age of 42, I knew much more about pink and breast cancer. 

Then I was diagnosed with stage III ovarian cancer. At first I was just too busy getting well to even think about the fact that I could do something about being clueless about gynecologic cancers. But I finished chemotherapy, my hair grew in and I felt better. In 2006 the consensus statement on ovarian cancer symptoms was published. Later that year when my gynecologic oncologist suggested I contact a local ovarian cancer foundation and get involved in raising awareness, I was finally ready. That September was the first time I told my story. I talked about the symptoms of ovarian cancer with other women and handed out symptom cards. It was also in September of that year that I joined with another family from my town to hang teal ribbons on trees to raise awareness of ovarian cancer.

Awareness of gynecologic cancers and ovarian cancer in particular has increased in the past 10 years but we have more work to do. There are still women, family members and health care providers who need to be educated about the symptoms of gynecologic cancers, HPV, risk factors, and the need for research to better understand the diseases and to find cures. Awareness efforts reach their peak every September during Gynecologic Cancer Awareness Month (GCAM) . If you want to help raise awareness you can wear teal, paint your toes teal, hang ribbons, participate in walk/runs or chats and share symptoms via social media or the handy symptom cards offered by several awareness organizations. These are just a few of the ways you can get involved and spread the knowledge which all women need to know about gynecologic cancers.

Here are some online resources for GCAM that #gyncsm would like to share with you.

  

Gynecologic Cancer:

#gyncsm Chat – September 9, 2015 at 9pm EST Topic: Gyn Cancer Awareness Month with a Spotlight on Uterine/Endometrial Cancer (gyncsm.blogspot.com)

Globethon to End Women’s Cancer – worldwide events http://globeathon.com/events/

GynCan- Gynecologic Cancer Awareness Network - http://www.gyncan.com/

Blogger/Social Media Challenge and Walk/Run 100 Miles in September

Foundation for Women’s Cancer  http://www.foundationforwomenscancer.org/, Awareness Month Role of Hereditary Cancer Fact Sheet : http://www.foundationforwomenscancer.org/wp-content/uploads/GCAM-2015-Fact-Sheet5.pdf

Ovarian Cancer :

Ovarian Cancer National Alliance (OCNA) http://www.ovariancancer.org/

#30Days of Teal

Check their Partner Member Page links to partner member websites and events.

National Ovarian Cancer Coalition (NOCC) - http://www.ovarian.org/ Check their website for local walks http://ovarian.org/upcoming_walks.php

Ovarian Cancer Research Fund (OCRF) http://www.ocrf.org/

Upcoming event can be found here.  http://www.ocrf.org/news/events

Wear Teal Day is Friday, September 4, 2015.

We would love to hear about the awareness activities you will be participating in during September. Please tell us in the comment section of this page or share it with us (@gyncsm) on twitter. 

Dee
Co-Founder and Co-Moderator #gyncsm community

#LCSM chat 8/27 8pm ET: Let's get social... in our health?

Christina and I are pleased to be joining the #lcsm community to discuss "Getting Social with your Health"  on Thursday August 27, 2015 at 8pm ET. Below is the guest post Christina wrote about the chat for the #LCSM Chat Website. 

The internet has obviously changed a lot of things. One of the most exciting and impactful changes for me has been how it enables patients to find each other and form disease communities. It began with discussion boards; now there are an amazing number of options to suit various interests, styles and comfort levels. The rise of online patient communities has been especially important for those with rare disease and diseases which carry stigma.

What is really exciting is to see patient communities go beyond internally supporting one another and reach out to make a bigger impact — with their data, in cross-disease advocacy and information sharing, and in working directly with doctors, healthcare workers, researchers, pharma and health IT professionals.

I’m definitely an admirer of the #LCSM community, which was formed and launched just prior to Dee Sparacio (@womenofteal) and I forming the #gyncsm community for gynecologic cancers. The #LCSM community has a great focus on turning ideas into action, pushing for collaboration, and is not afraid to get technical.

Guiding our discussion for the Thursday, August 27th #LCSM Chat at 8 PM (Eastern Time) will be:

T1: What are the benefits to patients and loved ones in connecting and sharing on social media? Why do you participate?

T2: What are your tips for getting started in using healthcare social media to connect and learn about a condition?

T3: What are some considerations and cautions when it comes to getting social with your health?

T4: How do we bring more people into the important discussions happening in digital health communities like #LCSM?

The #LCSM community is vibrant and welcoming. It is the perfect setting to check out getting social with your health – no matter your health background. I hope you’ll join us for a great discussion. Dee and I are honored and excited to participate.

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat. You can also check out the #gyncsm community disclosure statement on participating in healthcare social media.


Christina Lizaso (@btrfly12)
Co-Founder and Co-Moderator #gyncsm community
Moderator #patientchat

Further Reading:

• The Nature of Online Communities – #HCLDR (Healthcare Leadership) Blog
• Communicating the experience of illness in the digital age by Susannah Fox
• MedX Panel – Communicating the experience of illness in the digital age (video, notes & tweets)
• Power of twitter chats in in their ability to build community
• How to Be a Twitter Chat Champion via @np_blogexchange

We hope you can join us!

Dee 

Co-Founder and Co-Moderator #gyncsm Community

Dealing with Side Effects - August 12,2015 Chat

A wealth of information and support was shared during the night's chat on Dealing with the Short and Long Term Side Effects of Gynecologic Cancer Treatment. The lively chat included twenty-five participants including Dr. Matthew Katz, Dr. Anne Becker-Shutte and Dr. Elizabeth Dickson.
We had over 999,000 impressions with 15 tweets per participant.

Here are the questions that guided our chat and a sample of responses.

T1: Let’s start w/ surgery side effects...  Which affected you most? Which do patients say are most impactful? Tips to address?

T1: via MS @smartpatients “worst part of surgery was the pain meds after and the side effects of those, constipation” #gyncsm

— Women of Teal (@womenofteal) August 13, 2015

@edicksonMD: T1: Re pain meds: ask your provider for alternatives to pain medication. Advances in local pain control are happening!! #gyncsm

— Elizabeth Dickson (@edicksonMD) August 13, 2015

T2: Now let's talk about chemo. What were your side effects? Which are common? How aware of side effects are patients before start?

#gyncsm extreme nausea, shortness of breath, changes in mental status/chemobrain, extreme fatigue constipation fear shakiness anxiety

— Denise Archuleta (@Servivorgirl) August 13, 2015

T2: adjusting support meds and even dosing or schedule of chemo drugs can help with side effects. Discuss with your doctor #gyncsm

— Elizabeth Dickson (@edicksonMD) August 13, 2015

T3: What are some of the side effects of radiation? Which did you experience? What are patients most concerned about?

@gyncsm T3: Depends upon treatment type, external beam or brachytherapy, and location of treatment #gyncsm

— Matthew Katz (@subatomicdoc) August 13, 2015

@womenofteal T3. Fatigue, skin redness/irritation, hair loss in treated area common. #gyncsm

— Matthew Katz (@subatomicdoc) August 13, 2015

T4: For targeted therapy (TT) - Oliparib, Avastin, etc. - what are the side effects? Different from chemo?

T4: there can be high blood pressure and skin issues with targeted therapies #gyncsm

— Christina Lizaso (@btrfly12) August 13, 2015

T4: Good general info on side effects for Targeted Therapy from @NCI http://t.co/YjAGKB9Db7 #gyncsm

— Women of Teal (@womenofteal) August 13, 2015

T4: Many targeted therapies are still being studied. Whole side effect profile may not be known. Make sure to ask questions #gyncsm

— Elizabeth Dickson (@edicksonMD) August 13, 2015

T5: What side effects persist? Have you talked to your provider about them? Other side effects we haven't covered so far?

@btrfly12 #gyncsm My PCP manages most of the side effects but requires a lot of communication. I am 6 years out OC, praise God

— Denise Archuleta (@Servivorgirl) August 13, 2015

T6: What impacts are you willing to deal with to get more effective treatment? Have we seen changes in how side effects are managed?

T6: excellent question and one as individual as each woman fighting cancer. Only you know the answer and what is right for you #gyncsm

— Elizabeth Dickson (@edicksonMD) August 13, 2015

To read the complete transcript visit Symplur here.

Remember if you are a patient or caregiver you can join us and continue the conversation on the Smart Patients Platform at https://www.smartpatients.com/gyncsm. 


Our September chat will mark our 2nd anniversary as a health care chat and community on Twitter. We hope you can join us on Wednesday September 9 at 9pm EST . Our topic that night will be Gyn Cancer Awareness Month - Spotlight on Uterine/Endometrial Cancer. 

And as the song goes "See you in September..." .

Dee
#gyncsm co-moderator

Resources mentioned during the chat:

Insights Into Preferences for Psycho-Oncology Services in Women With GYN Cancer Following Distress Screening: http://t.co/7Lb70v9UeZ

Hair Loss: Research with DigniCap presented at #ASCO15 http://t.co/GF5MSXbSb2

Infographic from @NOCC_Illinois https://t.co/fJpNGSBnKh

How To Deal With Surgical Menopause? Helpful questions & answers http://t.co/Xz9UloxXjl

The #NCCN Patient Guidelines for Ovarian Cancer http://t.co/QMxTSiFOTG

Complementary and Alternative Medicine - National Cancer Institute http://t.co/fZuf5f4aMN

Side Effects of Radiation Therapy via ACS: http://t.co/P2ma187CqM

Radiation Therapy from the Foundation for Women's Cancer @GYNCancer http://t.co/2NfK8BvZGQ

Specific cancer information from SGO Patients, Caregivers and Survivors | SGO https://t.co/6pRgApbwyp

Overview page per side effect from @PRPCancerGuide and downloadable guide http://t.co/vMnLWw7ScR

Long-term side effect info from @cancerdotnet http://t.co/nymF9z7fW9

Additional Resources on Side Effects:

Radiation oncology:  @RWJMS

http://rwjms.rutgers.edu/departments_institutes/radiation_oncology/clinical/programs/gynecologic.html#potential

Foundation for Women's Cancer 

Surgery: http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/ovarian/surgery/

Chemotherapy:http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/ovarian/chemotherapy/

Coping with Side Effects:

http://www.cancer.net/cancer-types/ovarian-cancer/coping-side-effects