Wednesday, September 21, 2016

TIL - What We've Learned in the Past Year

If you have joined us for any of our chats you know that for the last ten minutes or so of each chat we ask participants to complete the phrase, Today I learned... which we fondly call TIL.

Since we celebrated our third anniversary this month, we thought we would share some of those completed phrases from each of the past year's chats.

September 2015 Gyn Cancer Awareness Month - Spotlight Uterine and Endometrial CancersTIL if even one woman with symptoms reads this tweet chat & goes to doctor as a result.... I'll be a happy person @darlakbrown

TIL to remember the importance of education for women,men on gyn cancers, starting in the schools. To Advocate for that too. & more @alenegonebad


October 2015 Open Mic
TIL U can get patients,survivors,researchers,docs in tweet chat room with no planned ?'s & they can have imp insightful conversation @womenofteal

TIL what a wide range of concerns and knowledge women bring with them to #gyncsm @robinsmrtptient


November 2015 Nutrition and Exercise
TIL: @DanaFarber has a nutrition app! @livestrong

Remember to take nutrition and exercise like anything else: some days will be better than others @edicksonmd


December 2015 Looking Back and Looking Forward
TIL: Self care is essential to be able to care for others @shannonwestin

TIL ( but really knew already) GYNCSM is a great group committed to advocacy and education for women's cancer survivors @journeycancer


January 2016 Taking Care of our Caregivers
TIL: Caregivers and patients share feelings of guilt about taking _needed_ time for breaks and self-care. @drbeckershutte

TIL: Just as important to care for the caregiver as it is to care for the patient - best chance for success! @shannonwestin


February 2016 Rare GYN Cancers: Vulvar, Vaginal and Fallopian Tube
TIL Just a reminder from my side of things: Having any rare cancer can be especially scary and isolating because you lack mentors. @drbeckershutte

TIL Advocacy for each gynecologic cancer is stronger when we work together. Thanks all for coming and learning tonight. @btrfly12


March 2016 Genetic Counselors and Understanding GYN Cancer Risk
TIL Knowing that gen counselors have this valuable info could help many patients who may not know/think of that resource. @robinsmrtptient

Genetics is an integral part of cancer prevention. Know your genetics. Get to know a GC. @GeneticCouns @maryfreivogel


April 2016 Re-envisioning Ovarian Cancer Survivorship
TIL I learned how important it is to have discussions surrounding treatment & aftercare so women can learn from each other. #gyncsm #BWSU @blkwomenstandup

TIL: Keep placing personal QOL needs front & center while supporting pts in decision-making. Real needs more valuable than paper @cbushrn


May 2016 Getting Social with your Health
TIL that those dx with cancer can use Social Media to feel connected, learn information, learn what ?'s to ask and support others #gyncsm @womenofteal

TIL about ASCO's COSMO initiative but was unsurprised to see that they still are struggling with quality of life as an outcome #gyncsm @alenegonebad


June  2016 What’s New in GYN Cancer Research
TIL there are oppty for pts to give input to clinical trials. Want to learn more about that and how to connect pts w those opptys @elisabethcramer

TIL: progress, but more work to be done, excited to be able to use FDA approved drugs for disease sites, luv survivorship data @crmillergo


July 2016 Spirituality and Quality of Life
TIL, from a very insightful community, what spirituality means & how others embrace & develop it, esp in challenging times @embosu

TIL (again/as ever) that virtual community is REAL community. I was so tired and pained today. Feel so much better now, thank you! @meredithgould


August 2016 Shared Decision Making and Patient-Centered Care
TIL: #SDM and #PCC are really like "Stone Soup" - everyone needs to put something in! @robinsmrtptient

TIL: PCC is a process, and we can encourage SDM through listening, mutual education, asking more questions @embosu


September 2016 Gyn Cancer Advocacy and #GYNCSM Goals/Aspirations
TIL that time flies, with tweet chats as well as kids. How can it be three years already? And that there is so much more to do. @drbeckershutte

TIL: (knew) How special Dee and Christina for creating this wonderful community - now we need to reach more gyn cancer survivors!  @shannonwestin

Thank you everyone who has joined us during the past year. We look forward to learning and growing in the year ahead.

Dee and Christina 
#gyncsm Co-founders

Note - View our CHAT TOPICS page (found via main top menu) to find recaps of each of our chats with links to the full transcripts.

Wednesday, September 14, 2016

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? 


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 

Monday, September 12, 2016

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

Friday, September 9, 2016

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

New to tweetchats?

Thursday, September 1, 2016

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
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)
UK Organizations:
Virtual Events:
Places to Find Personal Stories:
Gynecologic and Ovarian Cancer Symptom Images to Share:

Ovarian Cancer Awareness Month

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

Foundation for Women's Cancer
Ovarian Cancer Research Fund Alliance
National Ovarian Cancer Coalition
SHARE Cancer Support
  • Main Hashtags: #TealTuesday #ovariancancer #gyncsm
Virtual Events:
Places to Find Personal Stories:
 

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

FORCE


Christina Lizaso
co-founder #gyncsm

Friday, August 12, 2016

#Dazzle4Rare Campaign

The #gyncsm community supports women diagnosed with a number of gynecologic cancers that are considered by the NIH to be rare diseases. In an effort to raise awareness that Ovarian, Endometrial/Uterine, Fallopian Tube, Gestational Trophoblastic Disease, Vaginal and Vulvar Cancers are rare diseases, #gyncsm supports the #Dazzle4Rare campaign. You can join the effort too. Read the post below which originally appeared on the HESA website (http://www.hesaonline.org) and join us as we support #Dazzle4Rare during the week of August 15th - 21st. 

Here's something from #gyncsm that you can share:
  • Let's #Dazzle4Rare - Learn about some of the rare gynecologic cancers http://gyncsm.blogspot.com/2016/02/february-chat-rare-gyn-cancers-vuvlar.html #gyncsm
Click here to join the #Dazzle4Rare thunderclap.

#Dazzle4Rare Social Media Campaign

During the week of August 15th through the 21st HESA is going to #Dazzle4Rare. We will be tweeting, posting, liking, and sharing for rare disease. It’s projected that 1 in 10 people suffer from a rare disease [https://globalgenes.org/rare-diseases-facts-statistics/]. It’s also projected that there are at least six to seven thousand rare diseases. With 10% of the population suffering from between six and seven thousand rare diseases, it’s hard for any one rare disease group to spread awareness of their condition.

We can band together as a wider, greater community and spread awareness together and for each other. We can join hands and reach around the globe to share our messages with those who would otherwise never hear about many of these conditions. The more we speak up and speak out, the more likely we are to reach those who may need to hear our message the most.

Tag your selfies. Tell your rare disease story. Share someone else’s rare disease story. Raise awareness.

If you would like to join our #Dazzle4Rare campaign, join our discussion group. We’d love to hear your ideas, see your posts, and find out more about your organization! Let’s dazzle the World and show everyone how rare can shine!


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Dee and Christina
Founders, #gyncsm Community

Wednesday, August 10, 2016

August 10,2016 Chat - Shared Decision Making / Patient-Centered Care

Twenty five participants joined our moderators to discuss shared decision making and patient-centered care. We were pleased to have Kara Rayburn, Patient Empowerment Network (@power4patients) join us. You may find additional analytics here and the chat transcript here.

The questions used during the chat and some responses appear below.

T1: What would patient-centered care (PCC) look like for you? (for appointments, lab results, treatment, surgery, medical records, etc.)

  • Patient-centered care would consider treatment options based on patients' unique concerns, preferences, and values
  • Everything under one roof, team approach, easy-to-understand unified billing, easy referral to out-of-network specialists, Personhood, mutual respect, and caring go along with those services implicitly or it isn't PCC.
  •  Patent centered care means setting up medical evaluation and treatment options with a focus on where the pt is coming from
  • how about meeting me where I'm at---Text, email, phone appts.
  • or my family & myself patient centered care meant including the entire family in convos & treatment planning
  • In my dream world, PCC includes awareness that meeting mental health & social needs is a crucial element


T2: What is Shared Decision Making (SDM) in healthcare all about? Where can people learn more? What are tips for making it work?

  • It allows pts & their HC team to make decisions together-taking into acct both the best med evidence available & pts values/prefs
  • Shared medical decision making is a collaborative experience between patients and providers
  • As we move closer toward "consumers" of healthcare, #SDM allows for the patient perspective to become increasingly important 
  • DeMeester said “(SDM) occurs when patients/clinicians work together to reach care decisions that are both medically sound and responsive to patients’ preferences and values”
  • shared decision making requires informed choices...don't be afraid to ask questions and resources to learn more!
  • It sounds to me like SDM brings the values of person-centered care (Carl Rogers) to all medical settings beyond mental health.


T3: What value does a patient-centered care (PCC) / shared decision making (SDM) approach bring to patients, families and providers?

  • #PCC & #SDM allow for patients and their families to be active participants in doctor consultations
  • As a provider, I can have "tunnel vision", PCC and SDM help keep me grounded and focused on what is best for the patient
  • There is a lot to be said for knowledge, peace of mind, & comfort of care
  • "Good Outcomes" are defined by what's meaningful and valuable to the patients and their families
  • I think you can tell there has been PCC/SDM if all parties feel more satisfied and informed after an encounter
  • PCC & SDM are integral to the @GeneticCouns process: info can impact a patient & their entire family, no 1 right choice for all
  • #PCC creates value by changing infrastructure to include EHR & access to scheduling, thus strengthening the pt-doc relationship


T4: How can patient-centered care (PCC) and shared decision making (SDF) improve care at end-of-life?

  • PCC/SDM throughout the process means the end of life and discussing it don't come as a huge unexpected shock. 
  • #PCC and #SDM promise to improve the experience and quality of health care, while also reduce waste, over-treatment, and costs
  • #SDM takes relationship building so having that in place can only help in #EOL. It's uncomfortable territory for all involved.
  • shared medical decision making is the perfect way to address end of life care - help empower patients and ensure dignity
  • if the patient & their needs and wants is at the center of all discussions - May make end of life discussions easier
  • Seeing a theme: PCC & SDM are processes...they continue and evolve throughout patient & provider relationship, needs change ovr time


T5: Have you seen PCC and/or SDM put into practice? What has worked well? How have you benefited?

  • We all decided on best care for our loved one while being informed by Drs & social workers. Made horrible -tolerable
  • PCC & SDM work best when we take time to really listen. Easy to forget in the course of a busy clinic or stressful situation
  • The struggle is spending enough time to truly incorporate shared medical decision making in the context of an overbooked clinic
  • I think systems where you can get lab results online - if you want them that way - are PCC


T6: What are some of the barriers to PCC and SDM? How open to these concepts are the medical community? 

  • Time. Doctors are pressured to see many pts per day making it hard to build relationships and cover all pt concerns and issues 
  • one factor among providers that can reduce PCC can be burn out ...more and more professional societies are starting to address
  • Find the patient's perspective - the values of one patient don't match another's 
  • Patients need to realize seeing other staff is not disregard for their needs, it is to make sure their needs are met
  • Patient : ability to understand options, research them, learn it is ok to ask questions.

Resources shared during the chat may be found below.

Thank you Kara Rayburn for your insight and to our Health Care moderators and supporters for joining us. Remember you can always continue this conversation on Smart Patients at https://www.smartpatients.com/gyncsm.

September is Gynecologic Cancer Awareness Month and #gyncsm's Third Anniversary. Our chat topic is Gynecologic Cancer Advocacy. In addition, we will discuss the future goals of the  #gyncsm community and launch a ten question survey to help us better understand and serve our  participants. We hope to "see" you on September 14, 2016


Dee
#gyncsm co-founder

RESOURCES:

Patient Centered Care begins with Respect
https://modelingchange.blogspot.ca/2016/08/patient-centred-care-it-begins-with.html

A Person Centered Approach to the Care of a Chronic Illness
https://t.co/iyHjzfwsXX

The Role of Dignity in Health Care via @s4pm
https://t.co/M7LtmfAVky

Patient Centricity and Improving Clinical trials
https://t.co/OE5JStu0rj

@itsthebunk #MedX talk on Dignity in healthcare
https://t.co/wrVKhBpmws

@MayoClinic Shared Decision Making National Resource Center
https://t.co/wPA3YyPUwa

Robert Wood Johnson Foundation @RWJF Patient-Centered Care Collection
https://t.co/lBDils57nl

Tools for shared medical decision making by AHRQ
https://t.co/QCa7JFQy3Z

#EmpoweredPatient toolkit
https://t.co/b4ZDhbbaUK

Palliative care review of PCC
https://t.co/MguGfZWKo9

Accelerating Delivery of PC, High-Quality Cancer Care
https://t.co/o2IDKHFAep

Finding the Right Care for You
https://t.co/yWRihPYk9x

How to Communicate with Your Medical Team
https://t.co/FTBuEOy3bg

How to Tackle Physician Burnout
http://falconhca.com/how-to-tackle-physician-burnout/

Some good accounts to follow/check their website on #SDM @S4PM @IMDFoundation @PCORI

Suggestions from Smart Patients:
Society for Participatory Medicine
http://participatorymedicine.org/

Lown Institute
http://lowninstitute.org/home/vision-mission-history/