Thursday, November 17, 2016

Our Community - 2016 Survey Results

During September and early October we conducted a #gyncsm community survey. We were so pleased that 84 individuals took our survey. This is up from 37 respondents who completed our 2014 #gyncsm survey. We very much appreciate those who took the time to share their ideas and recommendations. Below are some highlights of the results.
 

The majority of survey respondents were Gynecologic Cancer Patient / Survivors (70.0%) followed by High Risk Individual or Advocate / Previvor (12.5%), Health Care Provider (11.25%), Caregiver / Loved One of a gynecologic cancer patient / survivor (10%) and lastly Cancer Researcher (5%).

The patient / survivor breakdown was:

  • 46.8% ovarian
  • 34.3% endometrial/uterine
  • 14.0% cervical
  • 8% fallopian, primary peritoneal, vulvar or GTD
  • 0% vaginal
  • 7.8% breast
Of the health care professionals who filled out the survey, the majority were nurses (42.8%) or gynecologic oncologists (28.5%). The remaining health care professionals were medical oncologists, radiation oncologists, researchers or genetic counselors.
 

We were interested in how followers interacted with the #gyncsm hashtag, chats and community. 43% of the respondents read the chat blog posts, 43% retweeted using the hashtag, 36% took part in a chat, 38% tweeted using #gyncsm, and 27% read a chat transcript. Less than 10% of the respondents joined us on Smart Patients platform. When asked specifically about our blog site, we found that 50% of the respondents visited our blog.

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

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

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

 

When we asked how we can better help the community and what topics we should discuss, here's some of what we learned:
  • Sometimes the time is either too early or too late.
  • Sometimes the chat is too quick for a meaningful discussion.
  • We should highlight other gyn cancers - endometrial/uterine, cervical were mentioned in particular. Continue to talk about clinical trials and genetics.
  • Talk about health care disparities and outcomes for women of color.
  • Talk about dealing with grief from the loss of friends.
  • Talk about sexuality after treatment.
  • Talk about what is important to younger patients.

We also asked respondents to share their thoughts on our #gyncsm chat/community and how it has has impacted their attitude toward their own health. Some of the things we heard are that #gyncsm provided:
  • Hope.
  • Made me feel part of the community.
  • Encouraged me to take more ownership in my own preventive health and advocacy for others.
  • Appreciate the range of resources offered.
  • Feel more empowered, less alone.
  • Led me to follow up more on some of my side effects and secondary challenges.
  • Wish #gyncsm could be leveraged into a new non-profit for all GYN cancers.
  • I felt like I was alone... there were no support groups near me. #gyncsm made me feel a part of a community.
But we also heard:
  • It is challenging for the hashtag to cover both advocacy/activism AND patient/survivor support - this is a common problem with other disease hashtags.
  • There needs to be more equal support for other cancers.

Lastly we wanted to know how individuals find out about #gyncsm. Respondents found us via:
  • Twitter
  • Other cancer chats
  • Facebook
  • Dee's Blog
  • From a friend
  • Researching cancer
  • Followed @btrfly12
  • NED twitter handle
  • Randomly found the #gyncsm chat
  • Smart Patients

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

Dee
#gyncsm Co-founder

Wednesday, November 9, 2016

November 9,2016 Your Health Care Team


Tonight we talked about the health care professionals and allied health professionals who are part of the team involved in the care of women diagnosed with a gynecologic cancer.

We were pleased to have 26 participants join in the discussion. Additional analytics may be found here. And the complete transcript here

Here is a quick overview of the topic questions and responses:

T1: Why is it important to think about who is on your health care team? Do you have a defined health care team?
  • Consider post-Cancer experts you may need (ex. fertility), & recognize team members aren't all physicians (nurse navigators)
  • my team is everyone who has helped me get through dx, treatment and now survivorship
  • You have 2 be able 2 effectively communicate w/ your care team; these shouldn't be people you meet once & trust 4 optimal outcome

T2: Which professionals do you include in your health care team? What are some important roles to fill?

Professionals mentioned include: 
medical oncologist
gynecologic oncologist
radiation oncologist
radiologist
nutritionist
genetic counselor
social worker 
financial counselor
therapist
pharmacist
nurse (clinical trial, adv practice, treatment)
primary care physician
mental health support
gyn-urologist

Non-professionals
those who help with insurance , bills, transportation etc
patient groups

T3: What are some possibly over-looked or under-used health care professionals that can have an important impact? 
radiologists
pelvic floor physical therapist
medical librarian 
pharmacist
health coach
nutritionist 
palliative care specialist

T4: Let's look at radiation oncology. What role does #radonc play on your team? Positives, negatives, ways to improve?
  •  T4 The role is coming more to forefront, care plan are being developed specifically for post-treatment for radonc profs
  • Historically, while they may be part of care team, radonc was not weighted in the "patient engagement" strategy. That's changing

T5: For nursing, what have you found to be some of the most valuable impacts? What would you like to see improved? 
  • RNs have a huge role in connecting the dots behind the scenes & caring in clinics 
  • Listening skills and documentation competency!
  • Nurses are also the front line when discussing issues of fertility and sexuality

T6: How do you handle communication and coordination between the members of your health care team?
  • I think, unfortunately, that there is still a need for patients to have their own documentation to facilitate communication
  • Patient is center of care team. Share concerns & ask questions. Improves communication & satisfaction.
  • ask your clinic what options are available: phone calls, texts, secure/HIPAA compliant email, telemedicine might be available
  • Sometimes I think the wisest course is to assume no one has heard anything from anyone else on the team, no matter how vital 

Resources: 

Board Certified Pharmacists as Team members
https://www.youtube.com/watch?v=GCJyQtgruXQ&feature=youtu.be

List of team members via @CancerCare
http://www.cancercare.org/publications/59-your_health_care_team_your_doctor_is_only_the_beginning

National Society of Genetic Counselors
http://www.nsgc.org/

The must-have binder: my key to being an organized patient (or caregiver)
http://lisabadams.com/2011/03/16/the-binder-what-every-patient-should-have/


The next #gyncsm chat is Wednesday, December 14th at 9pmET. The topic is Getting Involved in Research.   

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

See you next month. 

Dee 
Co-founder #gyncsm                              


Friday, November 4, 2016

November Chat - Your Health Care Team

This month our chat will look at the role various professionals and others play in the care of those diagnosed with gynecologic cancer. The Your Health Care Team chat will begin at 9pm ET on Wednesday November 9, 2016.

In preparation for this chat, have a look at this short video from SGO:

On Your Side: The Gynecologic Cancer Care Team

And here are the questions we will use to guide our discussion.

T1: Why is it important to think about who is on your health care team? Do you have a defined health care team?

T2: Which professionals do you include in your health care team? What are some important roles to fill?

T3: What are some possibly over-looked or under-used health care professionals that can have an important impact? 

T4: Let's look at radiation oncology. What role does #radonc play on your team? Positives, negatives, ways to improve?


T5: For nursing, what have you found to be some of the most valuable impacts? What would you like to see improved? 

T6: How do you handle communication and coordination between the members of your health care team?

We look forward to you joining us on Wednesday, November 9th.

Dee
Co-Moderator

Wednesday, October 12, 2016

October 12,2016 Chat - Warrior? Fighter? The Words we use...

Tonight's chat topic was Warrior?Fighter? The words we use... . We welcomed our regular #gyncsm physicians, patients, those who had been diagnosed with cancer and caregivers as well as those from other Twitter cancer and chronic disease communities. Forty-four participants in all  created over 2 million impressions during the hour chat. For more chat analytics please click here.

Below you will find tonight's topic questions as well as sample answers. You may find a transcript here. Please scroll to the end of the post for Resources.

T1a: What does the term "survivor" mean to you? Do you use it?

  • I usually say "cancer patients and caregivers." People out of treatment and/or in remission don't seem to mind being called pts
  • I like survivor if it means that you are survivor from the moment you're 1st diagnosed. A lot of surveys say survivor but mean NDP
  • Somedays I feel like a survivor, somedays a thriver, somedays a fighter, somedays just overwhelmed. So personal & so dependent.
  • I don't like the survivor label much. Avoid it when I can, but do use it sometimes due to lack of better word
  • My son's vocabulary quiz "To survive is to remain alive, even after great difficulties"
  • I think that the term survivor can be overwhelming for some patients - can make them feel like a failure if they recur
  • That's the term I always use. It has such a wide definition it seems to encompass all my patients.

T1b: What terms other than "survivor" do you use - for yourself or others?

  • On good days... "bad ass" *grin* RT : T1b: What terms other than "survivor" do you use - for yourself or others?
  • Cancer Experienced - I could go for that
  • some use thriver
  • Survivor replaced the victim language. So it is MUCH better than that!
  • There is always "person". We are so much more than cancer "survivors"
  • I say I'm living with cancer. I want to educate people about chronic cancer. Also I'm a lover not a fighter by nature 


T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

  •  I loathe the war metaphors.
  • As a marketer / former nonprofit person I purposely avoid war/battle. Though fundraisers will tell you those get the money.
  • Hearing it said someone lost her battle to cancer, is like fingernails on a chalkboard to me. Hate that.
  • The war analogies work for some - to "fire them up" - but for many it can feel like a failure if you frame it as a WIN/LOSE
  • War metaphors, we picture ourselves standing shoulder to shoulder. Survivor image is Robinson Crusoe or someone in a lifeboat.
  • it especially saddens me that the war language makes hospice or even palliative care "giving up"
  
T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

  • going with Cancer Experience again
  • I think journey can be good because it gives the idea of a beginning and an end - not win or lose
  • I never use journey
  • It has been a journey for me – with bumps and detours and flat tires and a great appreciation for things - the amazing views
  • both cancer Journey and cancer Experience seem to honor individual differences
  • a trek? maybe it needs its own term - isn't there a special term for those who climb Mt. Everest?
  • I say my cancer journey, experience or mostly my life with cancer (I think that started the 3rd time I got sick).
  • There definitely needs to be a verbal space for those who are living with metastatic disease, with cancer as a chronic illness.
  • I love (& hate) this tension between need for individual words vs. research needing consistent labels 

T4: What cancer terms or labels do you have a negative reaction to and why? 

  • Victim, sufferer, lost the battle - anything that makes the person in the situation sound downtrodden
  • The lost her/his battle to cancer. One of my top cancer language pet peeves. Insulting (IMO)
  • Battlefield analogies. Victim. Man I hate those
  • I try to avoid saying "your" cancer to a patient, instead say "the" cancer when talking about disease status
  • I cringe at Victim.
  • I am also a big hater of the words Prevent and Prevention. What we can do is reduce risk. Risk reduction
  • the lost/battle thing is more obvious when you think about calling someone a Loser
  • And don't get me started on the cancer is a gift thing


T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?


  • Just deeper understanding in general. Many terms are very superficial or show misunderstanding.
  • when someone dies, just say it. Died from colon cancer. or whatever. Truth telling. Plain & simple
  • Could cancer groups be more proactive w/ media to start changing way we speak about cancer? AFSP very active w/ media & suicide
  • Take cue from person with cancer. Use words she/he seems to like. Ask if certain words make them uncomfortable
  • Media - be responsible when reporting celebrity cancer news - whether deaths, remission, risk-reduction. Take some time.
  • Cancer groups - Think twice about battle terms and be sure you aren't excluding those who may need you most
  • few journalists specialize in medical reporting- if interviews are not quoted, risk to misinterpret information
  • Understanding how someone finds strength from life-threatening challenges provides insight on empathethic language
  • I loathe the "silver bullet" language - cancer is so many different diseases. One success does not equal a cure for all 


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


We look forward to see you next month on Wednesday , November 9, 2016 as we chat about Your Health Care Team Members. 

Dee Sparacio
Co-founder #gyncsm


RESOURCES


Andrew McDonald: The war of words about cancer - BMJ  http://blogs.bmj.com/bmj/2016/08/10/andrew-mcdonald-the-war-of-words-about-cancer/

Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog http://www.drbrianstork.com/blog/words-matter/
 
Susan Gubar: Not a Cancer Survivor - NYT http://well.blogs.nytimes.com/2012/09/06/not-a-cancer-survivor/

Nancy Stordahl: Nine Cancer Language Traps - Nancy's Point blog http://nancyspoint.com/nine-cancer-language-traps/
Jen Sotham: The Language of Helping a Loved One With Cancer - Cure  http://www.curetoday.com/community/jen-sotham/2016/08/the-language-of-helping-a-loved-one-with-cancer?p=1
Dee Sparacio: The Words I Use - WomenofTeal blog http://womenofteal.blogspot.com/2014/11/the-words-we-use.html

Blog | Why I Don't Like the Phrase Cancer Survivor http://www.cfah.org/blog/2013/why-i-dont-like-the-phrase-cancer-survivor

Blog | I did not fight cancer http://www.blogher.com/i-did-not-fight-cancer







Thursday, October 6, 2016

Warrior? Fighter? The words we use... Oct 12, 2016 Chat


Over the past few years we have noticed more men and women diagnosed with cancer and their caregivers/loved ones speaking out about the words used to describe their situations. Some people with metastatic disease do not see themselves as survivors while others do. Some who had surgery but no chemo don't call themselves survivors. Some are unhappy when they read that a friend lost their battle, while others consider themselves warriors. We understand that there is no right or wrong term to use, but we feel it is important to share the thoughts and feelings about these words with each other and our health care providers so we can understand each other better.

Our patient community partner, Smart Patients (@Smart_Patients), recently conducted a survey of 1,000 cancer patients on their platform. In response to the question, "How do you feel about the term 'cancer survivor' as a description of someone with cancer?", one third of the respondents chose negative, one third chose neutral, and one third chose positive. We look forward to having Smart Patients join us to share more about what they learned from their diverse community on this subject.

All those diagnosed with cancer, their caregivers, friends and family, as well as their health care providers, are invited to join us on Wednesday October 12, 2016 at 9pm ET to share your thoughts and feelings.

The topic questions are:

T1a: What does the term "survivor" mean to you? Do you use it?
T1b: What terms other than "survivor" do you use - for yourself or others?

T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

T4: What cancer terms or labels do you have a negative reaction to and why? 

T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?


To get ready for this chat, we have been gathering viewpoints on the words we use about cancer. We hope you have a moment to read through these essays.

Andrew McDonald: The war of words about cancer - BMJ

Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog



We look forward to this lively discussion. Remember, we are a community that respects each others' choices of how to describe a life that includes a cancer diagnosis. 

See you on Wednesday. 

Dee and Christina
Co-founders #gyncsm community

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 Cancers
TIL 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