Wednesday, February 10, 2016

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 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
  • 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? 

Please scroll down for Resources shared during the chat. 

You may continue our conversation about Rare Gyn Cancers on Smart Patients at

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. 

#gyncsm co-moderator


Vulvar Cancer 
New NCCN Guidelines published for #VulvarCancer
@GYNCancer ‘s video What Every Woman Should Know: Vulvar Cancer
@MayoClinic support for those w/ vulvar DX
@CDCChronic has some stories too
@cancercompass has a message board Vulvar Cancer Discussions;

Vaginal Cancer 
#VaginalCancer Treatment (PDQ)—Patient Version - Via @theNCI
Vaginal Cancer on @CancerDotNet
Vaginal Cancer Info via

Fallopian Tube Cancer 
Fallopian Tube Cancer on @CancerDotNet
Survivor Story Tina
Incidence of Ovarian, Peritoneal, and Fallopian Tube Carcinomas in the United States, 1995–2004
Research •role of fallopian tube to ovarian cancer
The Role of the Fallopian tube in Ovarian Cancer

Rare Diseases
#RareDisease Week on Capitol Hill

What Every Woman Should Know video campaign    
Gyn Cancer Symptoms Chart                        

1 comment:

  1. In its early stages, cervical cancer typically does not cause symptoms. It may be detected on Pap screening and subsequent testing even before symptoms have developed. When symptoms do occur, one of the most common symptoms is abnormal vaginal bleeding. This can include bleeding between menstrual periods, bleeding after sexual intercourse or a pelvic exam, or bleeding after douching. Unusually heavy menstrual bleeding and bleeding after menopause are also possible symptoms of cervical cancer.