February Chat : Rare Gyn Cancers- Vulvar, Vaginal and Fallopian Tube Cancers

With Rare Disease Day coming up on February 29th we were pleased to hold a chat on three of the rare gynecologic cancers - Vulvar, Vaginal and Fallopian Tube. Visit www.rarediseaseday.org and follow @rarediseaseday to learn how you can support their efforts to give a voice to rare diseases.


For this month's chat we had forty-six participants join us and we had over 1.5 million impressions. Additional chat statistics may be found here and a complete transcript may be found here.

A sample of responses to our questions appear below:

T1: What are some of the key things to know about vulvar cancer - risks, symptoms, treatments, etc.?

• Vulvar: estimated 5000 women will be dx with vulvar cancer in 2016. That is 1 in 333 women.Data: via @theNCI SEER data.
• Vulvar Cancer is classified into three main types, Squamous cell carcinoma, Adenocarcinoma, and Melanoma.                                
• via @MayoClinic Lichen sclerosus - uncommon condition that creates patchy, white skin that's thinner than normal.
• T1: Vulvar Cancer treatment: Main - Surgery (laser, excision, vulvectomy) Also - Radiation and/or Chemo
• @NCCNnews Vulvar guideline for professionals available. Patients can register on site to gain access. 

T2: What are some of the key things to know about vaginal cancer - risks, symptoms, treatments, etc.?

• Vaginal Cancer: @ACS estimated 4070 women would be dx with vaginal cancer in 2015.
• Main Vaginal Cancer Symptoms per @CDCgov: abnormal vaginal bleeding or discharge and changes in bathroom habits
• The pessary is placed into the vagina to support the uterus or bladder and rectum helps decrease urine leakage.
• Vaginal cancers are similar to cervical cancer in risk factors (HPV and smoking) and treatment (chemoradiation) 
• Laser and excision for vaginal precancer. Chemoradiation for cancer.

T3: What are some of the key things to know about fallopian tube cancer - risks, symptoms, treatments, etc.?

• Fallopian Tube: @cancerdotnet in 2013 stated FT cancer is 1% of reproductive cancers. There is a close link to #Ovca
• #fallopian tube cancer is often treated just like ovarian or peritoneal cancers
• Fallopian tube cancers can be associated with #BRCA syndrome - just like ovarian cancer!
• As much as 40% of what we call ovarian cancer may actually be fallopian tube cancer. There are both treated with surg and chemo
• Most epithelial #ovariancancer cases originate in the fimbria of the Fallopian tubes

T4: There is a suspected relationship between the fallopian tubes and ovarian cancer. What is the latest research showing?

• There are data to support that #ovarian cancer arises in the fallopian tube
• Research •role of fallopian tube to ovarian cancer https://t.co/tgtPuYptUP
• Primary peritoneal cancer is another rare gyn cancer and is similar to ovarian and fallopian tube.

T5: How does the treatment of these cancers differ from that of other GYN cancers (ovarian/cervical/uterine)?

• Treatment for recurrent vaginal and vulvar cancers is often extrapolated from cervical cancer trials
• For ovarian, see surgery, benefit of IP chemo, and main-line little or no radiation.

T6: Since these cancers are so rare, where can those impacted by vulvar, vagina, and tubal cancers find information and support? 

• for rare cancers the NCI PDQ often has treatment suggestions.
• @patientslikeme is another great resource for rare cancers/diseases
• Smart Patients https://t.co/Vn6IUq0QAi welcomes people with any rare cancer or disease
• Resources/groups for all GYN cancers: @GYNCancer @GynCAN @Globeathon @NEDmovie - info specific and applying across the type

Please scroll down for Resources shared during the chat. 

You may continue our conversation about Rare Gyn Cancers on Smart Patients at https://www.smartpatients.com/gyncsm.

Be sure to join us on Wednesday, March  2016 at 9pmET for our discussion on Genetic Counselors and Understanding Cancer Risk. Our guests will be the leadership of National Society of Genetic Counselors (@GeneticCouns). 

We look forward to seeing you then. 

Dee

#gyncsm co-moderator

RESOURCES

Vulvar Cancer 
New NCCN Guidelines published for #VulvarCancer https://t.co/NwdwHbUco5
@GYNCancer ‘s video What Every Woman Should Know: Vulvar Cancer https://t.co/JcoRpGH9wU

@GYNCancer http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/vulvar/

Vulvar Cancer Info via @theNCI http://www.cancer.gov/types/vulvar

@MayoClinic support for those w/ vulvar DX https://t.co/eUAKY1voiG
@CDCChronic has some stories too https://t.co/k8hQKJI6vR
@cancercompass has a message board Vulvar Cancer Discussions; https://t.co/G6spao9P9D

Vaginal Cancer 
#VaginalCancer Treatment (PDQ)—Patient Version - Via @theNCI https://t.co/jOqEbHFq1W
Vaginal Cancer on @CancerDotNet https://t.co/LY10V9PL8v
@GYNCancer   https://t.co/yfB4mOm46L
Vaginal Cancer Info via @theNCI http://www.cancer.gov/types/vaginal 

Fallopian Tube Cancer 
Fallopian Tube Cancer on @CancerDotNet https://t.co/lPQiPfVbSv
Survivor Story Tina http://eyesontheprize.org/stories/tinap.html
Incidence of Ovarian, Peritoneal, and Fallopian Tube Carcinomas in the United States, 1995–2004 https://t.co/3jISJgbVDu
Research •role of fallopian tube to ovarian cancer https://t.co/tgtPuYptUP
The Role of the Fallopian tube in Ovarian Cancer https://t.co/Rnsdeg6OKf

Rare Diseases
@rarediseaseday https://t.co/e97o9NYSKs
#RareDisease Week on Capitol Hill https://t.co/4CNOLkCbTc
@GlobalGenes https://globalgenes.org/toolkits/ 

General 
What Every Woman Should Know video campaign https://t.co/sd3l492Rdx    
Gyn Cancer Symptoms Chart  https://t.co/2B0kOOXKru                        

Rare Gyn Cancer Chat - February 10, 2016

February 29th is Rare Disease Day. In the past, we have tweeted about Rare Disease Day (#RareDiseaseDay) as well as shared information about the day on our blog (here and here). A disease is rare in the U.S. if the "disease or disorder ... affects fewer than 200,000 Americans at any given time." (http://www.rarediseaseday.org/)

The mission of #gyncsm is to support those impacted by all gynecologic cancers. One way we can do this is to offer information on rare gynecologic cancers and support survivors of those cancers. On February 10, 2016 we will be discussing Vulvar, Vaginal and Fallopian Tube cancers. 

An estimated 5,000 women in the U.S. will be diagnosed with Vulvar cancer in 2016. In 2015, it was estimated that 4,070 women would be diagnosed with Vaginal cancer. Around 300 to 400 women are diagnosed annually in the U.S. with Fallopian Tube cancer.  

Join us as we discuss these diseases. The topic questions are:
T1: What are some of the key things to know about vulvar cancer - risks, symptoms, treatments, etc.?

T2: What are some of the key things to know about vaginal cancer - risks, symptoms, treatments, etc.?

T3: What are some of the key things to know about fallopian tube cancer - risks, symptoms, treatments, etc.?

T4: There is a suspected relationship between the fallopian tubes and ovarian cancer. What is the latest research showing?

T5: How does the treatment of these cancers differ from that of other GYN cancers (ovarian/cervical/uterine)?

T6: Since these cancers are so rare, where can those impacted by vulvar, vagina, and tubal cancers find information and support? 

To prepare for the chat you may check these resources from Cancer.net:
Vulvar cancer: http://www.cancer.net/cancer-types/vulvar-cancer
Vaginal cancer: http://www.cancer.net/cancer-types/vaginal-cancer/overview
Fallopian Tube cancer: http://www.cancer.net/cancer-types/fallopian-tube-cancer


We hope you will join us as we raise awareness of the risks of these rare gynecologic cancers, support the women impacted by them, and support the clinicians and researchers who focus on treating these rare cancers. We look forward to your participation in this important discussion on February 10th at 9pm ET (8pm CT/ 6pm PT). 


Dee
#gyncsm co-moderator

World Cancer Day 2016

Thursday, February 4, 2016 is World Cancer Day. The Union for International Cancer Control (UICC) has selected “We Can” and “I Can” as the theme of this year's day.

Here is some information from World Cancer Research Fund International on the global impact of three gynecologic cancers - cervical, ovarian and endometrial.

Ovarian Cancer

• 7th most common cancer in women worldwide
• 239,000 cases in 2012 worldwide
• 5 year survival rate varies from 30-50%
• In 2012 the rate of ovarian cancer was more than two times higher in Central and Eastern Europe compared with Eastern Asia.
• The 5-year prevalence of women globally living with ovarian cancer is 22.6 per 100,000.

Endometrial Cancer

• 6th most common cancer in women worldwide
• 320,000 cases in 2012 worldwide 
• 5-year survival rate of over 91%
• The 5-year prevalence of women globally living with endometrial cancer is 46.8 per 100,000 (estimated from incidence and observed survival by cancer and age group).

Cervical Cancer

• 4th most common cancer in women worldwide
• 528,000 cases in 2012 worldwide
• Highest incidence of cervical cancer was in Africa and in Latin America & Caribbean
• Women become susceptible to developing cervical cancer following HPV infection, but other environmental factors are required for the cancer to develop.

You can join the campaign to reduce the cancer burden worldwide by signing the declaration on the UICC site, take part in the 'Talking Hands' activity or use the hashtag #WorldCancerDay or #WeCanICan on social media. Learn more at: www.worldcancerday.org


Dee
#gyncsm co-moderator

January 13, 2016 Caring for the Caregiver Chat

The topic of the first chat of 2016 was Caring for the Caregiver. In addition to our health care moderators and our mental health moderator we were joined by Denise Brown, @caregiving, from CareGiving.com.  

We had 42 participants, 663 tweets and over 4 million impressions. Additional analytics may be found here. You may find the transcript here.

For this chat, "caregivers" refers to the unpaid loved ones caring for someone diagnosed with a GYN cancer / serious illness. Below is a sampling of responses to our questions.

T1: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

• It's important to ask for and receive all the help you can. Caregiving is hard.
• Communication with health care pros and family members is critical--ask questions, share concerns, be open to feedback
• pencil in breaks, get back up - don't feel guilty about You time - hard to do but helpful

T2: Being a caregiver 24/7 is draining. What have you done to prevent “burn-out” -  for yourself or your loved one?

• Find the thing that helps you release, whatever it is. Exercise, meditation, hobbies. Remember to take time for you
• Have a support system that you trust--to whom you speak honestly about your feelings. Bottling up adds to burnout. 
• experiment with different options - meditation, yoga, crafts, vegging out - find what is right for you to relax and recharge
• Have a "Job Jar" list ready so you can take advantage of any offers to help. More help = less burnout.

T3: Caregivers-What do you wish your loved one spoke to you about? Survivors-Why is it difficult for you to talk to your caregiver?

• I think if pt/caregiver can touch on @caregiving's point about fear of being abandoned, that's key
• wish patients would share their fears more--sometimes talking about it helps both parties get "on the same page"
• I think everyone wants an honest conversation about the end and the courage to begin and revisit it as often as possible. 

T4A: Caregivers "wear many hats". What are some of those roles? Which seem to be the most challenging?

• My husband was my chauffeur, chef, insurance ombudsman, and advocate
• Family caregivers are cooks, drivers, med and wound care managers, appointment schedulers, keepers of the stories.
• An ear to listen; a shoulder to cry on; a heart to understand
• The toughest role I see caregivers play is the one of a person forced to watch someone they love suffer.

T4B: What are some tips and tools for keeping everything coordinated - healthcare, house, family, etc.?

• Sites to ease keeping everyone informed and coordinated: @rallyhood @CaringBridge @LotsaHelping @tyzenetworks
• In my family, we share a Google calendar to track appointments and divvy up responsibilities.
• I love the "cancer binder" concept. Also the virtual iterations of that. And willingness to let some balls drop.
• One of our tools [ on CareGiving.com ] are @Atul_Gawande-inspired checklists to help patients and caregivers self-advocate and navigate the HC system

T5: Where do caregivers go for support? Do you connect with other caregivers? What are some helpful resources for caregivers?

• Support groups. Knowing you are not alone.
• Remind caregivers (and patients) that therapy can be a powerful space for supporting health.
• Churches, temples, PTA moms, Teachers doctor's nurses, social workers in hospital 
• Just as you receive support, know you have wisdom and insights that benefit others, too

Please scroll down for Resources shared during the chat. You may continue our Caregiver conversation on Smart Patients at https://www.smartpatients.com/gyncsm.

Be sure to join us on Wednesday, February 10, 2016 at 9pmET for our discussion on Rarer GYN Cancers : Fallopian and Vulvar. February 29th is Rare Disease Day around the world - Learn more at www.rarediseaseday.org

Dee
#gyncsm Co-Moderator


RESOURCES

Cancer.Net webpages Caring for a Loved One 

@AmericanCancer - https://t.co/qmtsAiCLRo

Ring Theory - http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Facing Life with #ovariancancer for Caregivers @OCRF https://t.co/xyQJ8FxIXI

Coping with Cancer – For Family and Friends  @theNCI https://t.co/UlSzLz70vX

Helpful Tips for Supporting the cancer patient's long-distance caregiver @ONAcom https://t.co/VNKrcLJ3OY

Cancer Caregivers Support | Don't Do It Alone!!! | @SHAREing https://t.co/tSL4C9gLg1

Support for Caregivers of Cancer Patients: Transition After Active Treatment @AACR https://t.co/XdK3NNUGnG

6 vital things for caregivers via @savor_health blog https://t.co/j0HRL9ksl6

Providing friendship, understanding & support 4 kids/teens who have a parent w/ cancer #gyncsm https://t.co/LdtHYLlFBQ

Resource | Caregiver support groups, workshops, article from @CancerCare   https://t.co/ktuWjIR3MU 

Video - Role of the Caregiver 
http://www.curetoday.com/cureconnections/videos/a-cancer-journey-the-role-of-the-caregiver

@CancerSupportCm Cancer Support Community tips 
http://www.cancersupportcommunity.org/MainMenu/Family-Friends/Caregiving/Tips-for-Caregivers.html 

Sharing their pain http://www.curetoday.com/publications/cure/2015/spring2015/caregiver-challenge-sharing-their-pain 

Time management for caregivers 
http://www.curetoday.com/publications/cure/2015/Summer-2015/time-management-techniques-for-caregivers

General caregiving resources through @caregiving @carenovatemag @CaregiverAlly @NA4Caregiving @CaregiverAction

Help for #Cancer Caregivers: Burnout, Stress, Resources Coping with Loss & So Much More! http://www.helpforcancercaregivers.org

Caring for the Caregiver - @CancerAdvocacy Cancer Survival Toolbox® Special Topics http://www.canceradvocacy.org/resources/cancer-survival-toolbox/special-topics/caring-for-the-caregiver/
                            

First #gyncsm Chat of 2016- Caring for the Caregiver

Happy New Year !

Almost two years ago we hosted a chat on the Impact of Gyn Cancers on Caregivers and Family Members.  We discussed how caregivers, unpaid loved ones caring for someone diagnosed with a GYN cancer / serious illness, could help their loved ones. We also shared a number of resources and toolboxes for caregivers.

It has been said, "to take care of others one must take care of yourself" so this month on Wednesday January 13, 2016, we return to our conversation about caregivers in a Caring for the Caregiver chat. We are pleased that Denise Brown ( @caregiving) from CareGiving.com will be joining us at 9pm to share her insights and advice.  We invite all caregivers and survivors as well as healthcare professional interested in supporting caregivers to join us.

Questions to guide our discussion include:

T1: What would you share with those new to caregiving? What do you wish you or your caregiver had known about the caregiving role?

T2: Being a caregiver 24/7 is draining. What have you done to prevent “burn-out” -  for yourself or your loved one?

T3: Caregivers-What do you wish your loved one spoke to you about? Survivors-Why is it difficult for you to talk to your caregiver?

T4A: Caregivers "wear many hats". What are some of those roles? Which seem to be the most challenging? 

T4B: What are some tips and tools for keeping everything coordinated - healthcare, house, family, etc.?

T5: Where do caregivers go for support? Do you connect with other caregivers? What are some helpful resources for caregivers?

In preparation for our chat you may read many helpful tips for caregivers on the Cancer.Net webpages Caring for a Loved One .

We look forward to seeing our long time followers and welcome new survivors and caregivers to our community for this important discussion. See you then!


Dee
co-founder #gyncsm chat

December 9: Looking Back...Looking Forward

This month's chat gave us an opportunity as individuals and a community to reflect on the past year and prepare for the new year. We had 38 participants take part in the chat and had over 13 Million impressions. You may find our transcript here and our analytics here.

Before we began discussing our questions we announced that after two years as one of our healthcare moderators, Dr. Don Dizon will be stepping down. We appreciate the time, support and insights Dr. Dizon shared with us as we built our community. We are pleased that Dr. Shannon Westin will be joining Dr. Merry Markham, Dr. Rick Boulay and Dr. Anne Becker-Schutte as a healthcare moderator.

Our questions and some responses:

T1: What are some things you did in 2015 that brought you satisfaction? What steps have improved your overall quality of life?

• Spending time with family
• Painting
• Drinking more water each day
• Getting rid of negativities and dwelling on the positivities
• I teamed up with PBS to create a documentary on cancer survivorship, due out next June @journeycancer
• Thrilled that Sunstone Press published my book @BrightHeidi
• published our data regarding health issues experienced by gyn ca survivors during and after treatment http://www.ncbi.nlm.nih.gov/pubmed/26245979 - Dr. Shannon Westin
• release of book 100 Questions and Answers About Ovarian Cancer - Dr. Don S. Dizon and Dee Sparacio

T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2016?

• try exercising in 2016
• wish I had taken more time to relax and be with my family
• take a little time for my self
• Get back to reading a novel per month

T3: What has #gyncsm done well? What do you find most helpful from our chats, posts, blog, etc.?

• All & anything #gyncsm is doing is great! Communication is KEY to unlock my future!
• The forum to post ideas and support the community
• Brought together patients, clinicians, physicians, researchers, etc all in one supportive community
• GYNCSM filled a the void of an online active women's cancer social network
• The advantage of #gyncsm is the good signal/noise ratio and an active group of people who care.

T4: How might we enhance the #gyncsm community for ALL participants? What would you like to see from #gyncsm in 2016?

• anyone be interested in discussing some research presented at national meetings?maybe quarterly? Or build a relevant paper into the topic of the month
• a journal club would be a neat idea
• Maybe have a list of folks who might be interested in helping w/ research? Always looking 4advice from pts!
• We'd love to reach more survivors, loved ones and caregivers. Your ideas are welcome.
• perhaps creating connections at oncologists' offices to bring in others

T5: How might #gyncsm foster collaboration in the women's cancer space? Topics you'd like to see covered? Ideas to get more people involved?

• Definitely increase the interaction with @SGO_org - this has already started!
• Realistic & mentally sound advice i.e. Sex after Hysterectomies

We ended our chat as we always do asking participants to complete the statement Today I Learned (TIL).

• TIL-again-the commitment and compassion that is the backbone of the @gyncsm community.
• TIL (but really knew already) GYNCSM is a great group committed to advocacy and education for women's cancer survivors …
• TIL: Self care is essential to be able to care for others

Christina and I thank you for a wonderful year of conversations.


We look forward to having you all join us again in the New Year. We begin 2016 with a discussion on Caring for the Caregiver. We hope you will join us on Wednesday January 13, 2016 at 9pm ET.


Wishing our entire community Happy Holidays!


Dee
Co-Moderator

Looking Back ...Looking Forward - December 9, 2015 Chat

Over the past twelve months the #gyncsm community has grown. We've partnered with Smart Patients, included more guests in our chats, and conducted a joint chat with the #hpm community. We've seen an increase in the number of chat participants (averaging 47 participants per chat) and had well over 1 million impressions in a majority of our chats.

Embracing this season of reflection, this month's #gyncsm chat topic is Looking Back… Looking Forward. Join us on Wednesday December 9,2015 at 9pm ET/8CT/6PT.

We'll give our participants - survivors, caregivers, advocates, health care providers and researchers alike - a chance to Look Back at their year on a personal level and as part of our community. Then we will Look Forward to 2016 and what new things we can can do as individuals and as a chat community.

Our topic questions will include:

T1: What are some things you did in 2015 that brought you satisfaction? What steps have improved your overall quality of life? 

T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2016?

T3: What has #gyncsm done well? What do you find most helpful from our chats, posts, blog, etc.?

T4: How might we enhance the #gyncsm community for ALL participants? What would you like to see from #gyncsm in 2016?

T5: How might #gyncsm foster collaboration in the women's cancer space? Topics you'd like to see covered? Ideas to get more people involved? 

We hope you will join us and share your past experiences and your hopes for the year to come and for the #gyncsm community.

Dee
#gyncsm co-moderator