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