September 14, 2016 Chat - Gynecologic Cancer Advocacy & #gyncsm Community Goals

Today we celebrated our third anniversary as a chat and Twitter cancer community.

We want to take this opportunity to thank this year's health care moderators, Dr. Rick Boulay, Dr. Shannon Westin, Dr. Merry Markham and Dr. Anne Becker-Schutte. We also want to thank one of our founding health care moderators, Dr. Don S Dizon and Dr. Matthew Katz who wrote our Tweet Disclaimer. And to all the organizations and individuals who supported us by sharing our tweets and information about our chat, thank you.

Since September is Gynecologic Cancer Awareness month it was fitting that our chat topic was Gynecologic Cancer Advocacy and #gyncsm goals. We had 34 participants join us for our chat and had over 1.5 million impressions. Additional analytics may be found here.

The questions we used to guide our discussion appear below with some sample responses. Please see our transcript here for the complete responses and the names of additional advocacy organizations.

T1a: What skills have you gained in learning to advocate for yourself / loved ones / patients?

• Using social media as a way of promoting awareness. Advising women to journal their symptoms.
• Still working on speaking up for myself when I'm in the doctor's office. A work in progress. I do fine speaking up re: my kids
• Have learned importance of going into appts prepared as much as possible.  

T1b: Being your own best advocate when it comes to your health isn't always easy. What are some tips and resources?

• Picking up new words quickly. If in person, asking what they mean, how they are spelled, etc., helps me learn.
• If possible, bring a buddy. A second set of ears, voice for clarification, note-taker, etc can make a huge difference
• Society for Participatory Medicine @s4pm is a great group. Talking w/ other patients. @intakeme has ePatient101 online course 
• @power4patients another good resource. @smart_patients community and other communities

T2a: What groups/organizations are you involved w/ that advocate and raise awareness for women's cancer? 

• @Sgo_org @GYNCancer @OCRF
• NOCC of course
• Advocacy organizations are vital to raising awareness @GYNCancer [correct tag @NOCC_national] @OCRFA @CancerSupportCm @gyncsm 

T2b: How will you be advocating for yourself and others this month? Share as well any events/campaigns others can join.

• wearing my teal ribbon bracelet all month and starting conversations, wearing teal on tuesdays, RTs and posts on my personal FB
• Just gave a lecture to our ovarian cancer survivor group, keeping teal on whenever possible, bringing up gyn cancer on twitter!
• Just completed a documentary with PBS "Close to Home: cancer survivorship" airs next week on PBS 39. 

T3: For gynecologic cancers, what are the barriers in raising awareness? 

In advocating for improvements in care?

• All rare diseases are tough to shine the light on
• Women can be afraid to discuss gynecologic cancers - it can be an uncomfortable topic - they feel alone 
• Still see a lot of taboo with gyn cancers. Also, many women are not educated about their own bodies. That is the starting point.
• advocates of less prevalent cancers can definitely gain by working together to amplify their voices - collaborating where can

T4a: In the past 3 yrs, have you seen changes/progress in GYN cancer awareness, treatment and advocacy? 

• Huge patient advocate presence on social media - easier for patients to interact with each other and share knowledge
• There has been a strong increase in advocacy efforts through resources and education from partners like @GYNCancer [correct tag @NOCC_national] @OCRFA
• The cancer moonshot can only help. The PBS documentary on cancer last year helped too.
• Progress with the Immuno-oncology drugs and other biologicals. Slow but steady improvement

T4b: What issues do you think it's important for the #gyncsm community to advocate around?

• Something I wonder about is uterine/endometrial cancer... why no large national organization when more cases than cervical, ovarian
• Encouraging clinical trial participation
• survivorship planning, end of life too
• patient reported outcomes, quality of life, survivorship

T5: What can we do to better fulfill [#gyncsm's] mission? How can we bring more gyn cancer survivors into our community? 

• I'd love to find more participants.
• I'd love to see a .gov or neutral supported site with patient communities listed dr's could feel comfortable referring patients too. 

During tonight's chat we launched our 2016 #gyncsm Community Survey. All followers and chat participants are invited to answer the short 10 question survey which is located at www.surveymonkey.com/r/STHG6RC .
We will collect responses from today until October 11, 2016.

We hope you will join us on Wednesday , October 12th at 9pmET for our chat Warrior? Fighter? The words we use... .

Remember you can always continue this conversation on Smart Patients at https://www.smartpatients.com/gyncsm .

Dee
Co-founder #gyncsm 

A Caregiver's Story: On a Brisk November Saturday...

Over the past few years, we have spotlighted the stories and voices of women diagnosed with a gynecologic cancer. Today, we are pleased to share a caregiver's story with our community. Dan's wife, Lizzie was diagnosed with the rare cancer, MMMT, mullerian mixed malignant tumor or carcinosarcoma. Here he poignantly shares his experience.

On A Brisk November Saturday in 1982

On a brisk November Saturday afternoon in 1982, I was looking for something to do that night,not something typical, but something with substance. Looking through the weekend section of The Philadelphia Inquirer, I found it. There was going to be a poetry reading at a bar I hadn’t been to located on the southern edge of center city Philly, a place that was neither here, nor there.

With enough time to arrive, I drove down from the little row house I had bought at a HUD sale, renovated over a three year period, in a leafy neighborhood a short walk from the sprawling Wissahickon Park. After finding a parking spot, I walked to the thirteen hundred block of South Street, a block that was normally empty of activity, but for this bar, and the occult shop just down the block.

The Bacchanal was where artists, writers, art students and other artsy types who lived in or near center city hung out. The façade was a cacophony of bas reliefs, pieces of sculpture and painted brick. Color, motion and emotion were evident.

When I walked in, the art on the façade followed, for the bar, walls and ceiling were captivating in what I saw. I inquired about the reading and was directed to a room through a double door opening in the wall. There was no one in there, so I picked what I thought would be the best spot: a single chair table off center from the podium located in a small nook that would allow me to lean the chair back against the ninety degree outcropping, thus producing a triangle.

Within ten minutes of my arrival, people began filing into the room. Shortly, the room was overflowing with males, females, long-hairs and short-hairs. There were three people at the podium, two males, one female. Before too long, the males left and the attractive, wild-haired female took the mic.

“Hello, everyone. Thank you for coming to the Bacchanal and the monthly poetry reading of Open Mouth Poetry. My name is Elizabeth June Madden and I will introduce all of tonight’s readers. First is…”

The evening rushed by. Poetry of various types was read. There was laughter, outcries of “Right on!” and quiet. Then, she read. The room had an air of anticipation and everyone followed every word. It was obvious that she was on a totally different level from all the other readers.

When she finished, she announced when and where the next reading was, thanked everyone for coming, offered a safe journey to all.

The room was now filled with standing people, some talking, others moving slowly to exit. I followed the latter crowd knowing that in doing so I would come within inches of her.

“Hi. Really enjoyed tonight, especially your poetry.”

“Oh, thank you.” Her high rosy cheeks glistened under the subdued lighting.

“I’m Dan Zibman.”

“I’m Elizabeth Madden.”

We were both in our thirties, had experienced life, had put ourselves through college, had lived in similar places (the Bay Area, the Miami area) at different times.

On a hot, humid August Saturday in 1984, we were married at a small, lovely mansion we had rented which adjoined an Episcopalian church in St. Davids, on Philadelphia’s main line. It was a great party although I couldn’t enjoy the wonderful food as my taste buds had shut down.

On the coldest day in February, 1986, Lizzie gave birth to our daughter, our only child. That night, the three of us lay in the hospital bed looking out the window at center city Philly below and the gently falling snow.

In the Spring of 2014, Lizzie complained of a vaginal infection, so she drank cranberry juice, which, in the past, often helped. This time it did not, thus causing her to see her gynecologist. The report was an infection resulting in a round of antibiotics. That seemed to help.

That summer, we drove to Oak Island, NC to see friends who had retired there. We had a wonderful
time and took a different route home to central NJ. Driving up US 17 along the bayside of Albermarle
Sound, we had lunch and explored the pre-revolutionary war town of Edenton, NC. Once through the Chesapeake Bay Bridge Tunnel, we stopped in the lovely, peaceful Chesapeake Bay town of Onancock or dinner before overnighting near Assateague/Chincoteague on the way home.

Back in New Jersey and not too far from home, I suggested that we have pizza at our new favorite place in Bordentown. Uncharacteristically, Lizzie said that she would rather go straight home as she wasn’t feeling too well. We talked and she agreed to return to the gyn.

After a series of CT scans, we were told that a few masses were found and an gynecologic oncologist was recommended. We were stunned, but kept our spirits high. At this point, I realized that my job was to keep Lizzie “on the good foot” by my being upbeat and encouraging, continuously.

In the early morning of the day we were to confer with the surgeon, Lizzie was in distress. I called the surgeon and was put through to his on call partner who arranged for us to enter the hospital via the ER. Being there was very helpful, as simply staying at home and waiting for the appointment made no sense.

More scans, then tests. Finally, we met the surgeon, a well trained (Dana Farber) young man with a great bedside manner. He explained that he will operate that afternoon, it was that critical. The initial assumption was ovarian cancer although the biopsy would define it.

I called our daughter who lived with her fiancé in Baltimore. They immediately left to come be with us.

Before the surgery, Lizzie and I joked and laughed. “Gotta be upbeat,” was all that ran through my head.Five hours of surgery later, with our daughter and future son-in- law now at the hospital, Lizzie was wheeled into the recovery room. The anesthetics used had caused her to swell to such an extent that even her eyes were swollen. Slowly, the effects wore off.

During the surgery a small diameter tube had been positioned in Lizzie’s stomach area. This was to allow for the administration of chemo directly onto the presumed area that needed it.

Now admitted to the hospital, we took up residence on the surgery floor and spent the next three weeks there. Part of this time was to allow for another operation as a small mass had been located immediately under her right lung. That operation, while much shorter in time, was more troublesome as Lizzie now had difficulty laying on her back and side.

With Lizzie in the hospital, I spent 10-12 hours a day with her, walking her around the floor for exercise, talking, having visitors, falling asleep. Eventually, I fell ill with a bad cold and had to stay home for three days which troubled me greatly.

When we received the biopsy report, we learned that it was not ovarian, but a much more rare cancer specific to women, MMMT, mullerian mixed malignant tumor or carcinosarcoma. Additionally, it was stage IV because of its having spread beyond the peritoneal cavity. This was not good news, but we were still in shock from all that had happened, so this “news” did not trouble us as much as it could have.

Finally, Lizzie came home and shortly thereafter we started our first round of chemo (carboplatin/taxol followed by Neulasta) which took us through the winter. By this time, Lizzie was much better and after close examination was declared in remission. We were thrilled. In the midst of this, Lizzie demanded that the plastic tube be removed from her stomach as it was not being used and only causing her discomfort (she could not be supine and had to sleep, or try to sleep, sitting up). Relief arrived with the tube’s removal (the tube was not being used as the chemo had to circulate as opposed to being placed in a specific spot which would have been the case if it had been ovarian).

All this was great as the plans for our daughter’s wedding were starting to become reality. At the wedding shower, Lizzie was not only her typically beautiful self, but also full of her normal high level of energy.

The Spring yielded to the Summer, and soon something was wrong. The cancer was back, the remission short-lived. After speaking with the young onco-gyn surgeon, he told us that Lizzie would indeed dance at our daughter’s wedding. But, he also told us that she had about six months to live which meant the end of the year (2015) or so.

This news was delivered to us on the phone as we sat in the little sky blue roadster Lizzie loved so much. After we hung up, we looked at each other and said in unison, “Fuck it. We’re getting through this.” Our next move was to call our daughter and tell her that we were on our way to visit, right now, that “we had to get away.” And so we drove to Baltimore.

With the August wedding now rapidly approaching, Lizzie was struggling and in great discomfort (She had to lay flat out on the back seat of our car as we drove the two and a half hours to Baltimore). Lizzie did as she had so wanted to do, be the Mother of the Bride, walk gracefully and beautifully down the aisle with our wonderful Baby Girl between us. Lizzie even found the strength, the will, to dance, boogieing as though all were well.

She delayed the start of the next round of chemo until immediately after the wedding because she wanted to feel reasonably well rather than fully awful. Thus, on the Tuesday following the wedding, we resumed chemo only this time with Avastin/taxol and no Neulasta, thankfully. This regimen was recommended after meeting with a gyn oncologist specialist at Fox Chase Cancer Center in Philly.

Over the next few weeks, Lizzie responded well to the Avastin, so well that we drove up to Dana Farber in Boston to meet a woman who is considered an expert in MMMT. The doctor not only saw us, but also arranged for us to see one of her colleagues that same day and to see another doctor within two weeks.

We did learn, however, on this initial visit to Dana Farber, that there were possible deadly effects from Avastin due to the potential for bowel perforation. This was the first we had heard of such a possibility and, since the reoccurrence of the tumors showed that the largest one was literally resting on Lizzie’s bowel, we were concerned.

Sometime in the Fall, we went to Sloan Kettering to see one of the other MMMT experts in the country. We did this because we could, not because we were unhappy with our doc at Dana Farber. By this time, our perspective was, “The more information, the better.” The doc at Sloan, while with “impeccable”credentials, was too impersonal for us. Her personality approached the sarcastic. Lizzie and I looked at other and said, “We won’t be returning here.”

A good friend and former colleague had been a cancer researcher before changing careers. However, he used this extensive knowledge to become one of Wall Street’s top-rated biotech analysts. He gave us very sound advice and encouraged us to become part of a clinical trial. We tried this and were on the wait list at Dana Farber. Our doc there wanted us to use the so-called “frontline drugs” before doing a clinical trial explaining that the trials were when all else had been tried, and had stopped working. Lastly, we learned that a very small percentage (~10%) of cancer patients end up in clinical trials and that, of those, a much smaller percentage have success.

Lizzie continued to do well. Thanksgiving and the Christmas season found us reasonably happy. The biggest challenge was the constipation which, at times, was horrible. Adjustments were made to the chemo infusions which did reduce this issue.

We made our third visit to Dana Farber, taking the train a second time, when our Doc suggested that we stop the Avastin, that we had had a “good run,” but that the bowel perforation issue was too great to ignore. She emphasized that women had died of this rather than the cancer that afflicted them. Her words were strong and,so, she informed our local oncologist to cease the Avastin with the first chemo administration in January and to administer taxol only.

The New Year came and went and, so, too, did the “six months”. This had been sitting on my mind and, although we did not discuss it, I am sure it was front and center in Lizzie’s beautiful mind, too. Late winter had Lizzie and a few of our female neighbors/friends, three of whom are cancer survivors, pile into a neighbor’s SUV and drive to Pittsburgh. Once there, they saw the Andy Warhol Museum, other museums, enjoy good food, stay at a B&B and visit “Falling Waters” which Lizzie loved.

Once back home, at the beginning of Spring, the same “crew” drove to Philly to visit the Pennsylvania Academy of Fine Arts and sip coffee and have a generally good time. All was going well. So much so that I commented that, “The butt was back.” Lizzie had the most enticing derriere of any woman. She had lost so much weight that this “feature” had been lost, too. Now, she was gaining weight and looking more and more healthy.

Throughout the Fall and Winter, we made several trips to Baltimore often going via Annapolis. The plan was that we would retire in July, 2016, have sold the house in central NJ by then, buy a place in Annapolis and, thus, be much closer to Baby Girl and her man. We had even made offers on a couple places, but they were rejected. Nevertheless, we maintained the hunt.

In April, we had made plans to visit Dana Farber for the fourth time. Train reservations were made, the hotel room reserved.

Our Dana Farber doctor now wanted us to stop the taxol and switch to Doxil. This was encouraging as it meant once a month rather than three times a month as with the other drugs. The only downside was that we would have to resume the dreaded Neulasta. Lizzie said that she would put on her “Big Girl pants” and do what had to be done.

The trip to Boston never happened. In mid-April, something was wrong, very wrong. We had had the first dosage of Doxil, but could not do the Neulasta as we were now in the hospital. I thought, as did Lizzie, that we would be there for a week, maybe a day or two more, but that was it.

There were procedures to relieve fluid buildup (paracentesis), ct scans, discussions about the next dosage of Doxil. By the end of the second week in the hospital, I knew that My Darling Lizzie would not be coming home. She knew it, too. So, too, did our daughter who was now with us for an extended stay.

My darling wife of almost 32 years, died on 18 May 2016 after a 20 month struggle w/ MMMT. I spent every moment with her while she was in the hospital this last time and, eventually, hospice, sleeping in her room, whispering to her throughout the night that I was there, that I Loved Her, repeating these words over and over when she could no longer speak.

Her quality of life was quite high for sixteen of those twenty months. If you had met her in February or March of this year, then you would not have known all that she had been through, what she was going through.

Lizzie was/ is in my heart more than I had ever thought a wife/lover/best friend/ partner could, or would, be. She was one of the most intelligent people I had ever met. She was beautiful, kind, thoughtful, sensitive, insightful into what others had in their hearts, energetic and creative, embraced all regardless of race/culture/religion/background. She did, however, have difficulty with those with attitudes, those who were not pure in their hearts. Additionally, she was one of the best dancers on any dance floor anywhere and was a joy to watch. Oh, she had her “tough” side. She was, after all, from a working-class neighborhood in Philadelphia, just like myself, but that toughness tended to be reserved for those whom she loved the most and was usually triggered when she was disappointed with something that was said or done. And, she was always right.

Lizzie worked hard her entire life, earned everything she achieved and when she could just “take it easy”, she still chose to work. That was who she was.

I loved /love her deeply, completely as she did me. The gift of her love liberated me, allowing me to love fully and to be loved fully in return. And, that’s the way it was for her, too (although she would initially reject such a notion). I am a lucky man and am deeply grateful to my Lizzie for the relationship that we built.

I weep everyday, have placed “altars” around the house consisting of photos of her, pull her clothing that hang in our closet to me each night, so that I can smell her enchanting scent, touch the box containing her ashes, lightly glide my fingertips over her image in the photo I had taken of her on a summer’s day on the big, wide beach in Brigantine, NJ, in 1983.

To paraphrase WH Auden,
“She was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song”

I send Love to all those going through the limitless heartache of having lost a spouse/significant other.

~~~~

Thank you, Dan.

Dee and Christina
Co-Founders #gyncsm

Note: more information about Uterine Sarcoma may be found on the NCI website at
http://www.cancer.gov/types/uterine/hp/uterine-sarcoma-treatment-pdq

Gynecologic Cancer Advocacy & #gyncsm Community Goals - September 2016 Chat

It is Gyn Cancer Awareness Month! What better time to chat about Gynecologic Cancer Advocacy than September. Christina and I are also excited to celebrate #gyncsm's 3rd Anniversary as a chat and a Twitter community. Over the past three years we hope #gyncsm has provided patients, survivors and caregivers of women impacted by gynecologic cancer a place to gain valuable information about gyn cancers, available treatments and emotional support. For the healthcare providers and researchers we have welcomed, we hope #gyncsm has provided insight into the experiences of those impacted by gynecologic cancer. We will wrap up this month's chat speaking with you - our #gyncsm community members - about our goals.

We hope you will join us as we delve into these topic questions:

T1a: What skills have you gained in learning to advocate for yourself / loved ones / patients?

T1b: Being your own best advocate when it comes to your health isn't always easy. What are some tips and resources?

T2a: What groups/organizations are you involved w/ that advocate and raise awareness for women's cancer? 

T2b: How will you be advocating for yourself and others this month? Share as well any events/campaigns others can join.

T3: For gynecologic cancers, what are the barriers in raising awareness? 

In advocating for improvements in care?

T4a: In the past 3 yrs, have you seen changes/progress in GYN cancer awareness, treatment and advocacy? 

T4b: What issues do you think it's important for the #gyncsm community to advocate around?

T5: What can we do to better fulfill [#gyncsm's] mission? How can we bring more gyn cancer survivors into our community? 

Another exciting part of this month's chat will be the launch of our 2nd Community Survey.

This short 10-question survey will launch on the day of our chat, September 14, 2016 and will end on October 11, 2016. We hope to learn more about our members, your background, topics of interest to you, and what we can do to improve your experience and our #gyncsm community.

So be sure to join us on Wednesday, September 14, 2016 at 9pm ET (for your local time click here).

See you then,

Dee
Co-founder #gyncsm

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Awareness and Advocacy - Sept Round-up

Awareness months are a wonderful opportunity to build momentum around a health cause. Here are lots of resources and information about the great things you can get involved with for Gynecologic Cancer Awareness Month and Ovarian Cancer Awareness Month. We'll add to this post as the month goes along. You can also check out our RESOURCES section for overall and cancer-specific organizations and resources that are helpful year-round.

Gynecologic Cancer Awareness Month

Foundation for Women's Cancer

• Campaign homepage: http://www.foundationforwomenscancer.org/gcam2016/ Note - Here you will find great graphics to share highlighting each of the main gyn cancers.
• SGO counterpart page: https://www.sgo.org/social-media/social-media-gcam/
• Main Hashtags: #EndWomensCancer #sharethepurplelove
• Other Hashtags: #gyncancer #GCAM

Cervivor (Cervical Cancer Awareness Month is January, so love seeing them join along)

• Main Hashtags: #gcam #gyncsm #preventcc 

National Cervical Cancer Coalition (Cervical Cancer Awareness Month is January, so love seeing them join along)

• Campaign homepage: http://www.nccc-online.org/gynecological-cancer-awareness-month/

UK Organizations:

• The Eve Appeal, Jo's Trust
• Main Hashtags: #GynaeMonth #knowyourbody

Virtual Events:

• #GCAM chat w/ NCCC - Mon 9/12 2pmET
• #gyncsm chat - Wed 9/14 9pmET, See RECAP

Places to Find Personal Stories:

• #gyncsm Community Blog Stories

Gynecologic and Ovarian Cancer Symptom Images to Share:

• https://www.pinterest.com/christinalizaso/gyn-cancer-symptom-awareness/

Ovarian Cancer Awareness Month

Presidential Proclamation - National Ovarian Cancer Awareness Month, 2016
http://go.wh.gov/ZkDRGY

Foundation for Women's Cancer

• Campaign homepage: http://www.foundationforwomenscancer.org/gcam2016/ Note - Here you will find great graphics to share for ovarian cancer.
• Main Hashtags: #TealTuesday #sharetheteallove

Ovarian Cancer Research Fund Alliance

• Partner Member Events: http://www.ovariancancer.org/2016/08/03/september-partner-member-events/
• Main Hashtag: #30daysofteal 

National Ovarian Cancer Coalition

• Campaign homepage: http://www.ovarian.org/knowovarian Note - has links to all their run/walks.
• Main Hashtags: #knowovarian

SHARE Cancer Support

• Main Hashtags: #TealTuesday #ovariancancer #gyncsm

Virtual Events:

• #WearTealDay - Fri 9/2, Annual event on the first Friday of September
• #OCAMChat - Tues 9/6 5:30pmET
• CancerCare Webinar on Medical Update on Ovarian Cancer - Wed 9/7 1:30pmET
• #HERchat w/ @beBRCAware @ShannonWestin - Thur 9/8 7pmET
• Ovarian101 Thunderclap - Sat 9/10, Join the campaign by 9/9 
• SHARE Webinar on Strategies for Long-Term Management of Recurrent Ovarian Cancer - Thur 9/15 12pmET
• SupportConnect Webinar on Clinical Trials and Ovarian Cancer - Thur 9/15 8pmET
• Ovarian Cancer SU2C Dream Team Update Webinar - Thur 9/22 6pmET

Places to Find Personal Stories:

• NOCC-Northern Virginia Chapter Faces of Hope

 

Hereditary Breast and Ovarian Cancer Week (9/25-10/1) and Previvor Day (9/28)

FORCE

• Event page: http://www.facingourrisk.org/get-involved/events/special-event.php

Christina Lizaso
co-founder #gyncsm

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