March Chat Genetic Counselors and Gynecologic Cancer Risk

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

-Mary Freivogel 

For this month's chat, we were joined by the National Society of Genetic Counselors (@GeneticCouns) Past President Joy Larsen Haidle (@JoyLarsenHaidle) and NSGC President-elect Mary Freivogel (@MaryFreivogel) to discuss Genetic Counselors and Understanding Gynecologic Cancer Risk. We had 45 participants and achieved over 1.7 million impressions.  Additional analytics may be found here. 

A small sample of the responses to each of our topic questions appear below. You may read the full transcript here.  (Please scroll down for a list of valuable resource shared during the chat. )

T1: What is genetic counseling and why it is recommended prior to genetic testing?

• @GeneticCouns help estimate #cancer risk, discuss test options & explain how test results might be used in your medical care 
• We (Genetic Counselors) help to make sure genetic testing is the right choice for you and your family! 
• Not everyone would benefit from a genetic test. Talk to a #geneticcounselor to learn if testing is useful for you.
• Genetic counselors help people understand & adapt to med,psych & familial implications of genetic contributions to disease… 

T2a: Who should consider genetic testing? How does it help those already diagnosed w/ a GYN cancer? Does it impact treatment plans?

• T2A @SGO_org recommends genetic testing: https://t.co/Q3rMU66Qey
• Cancer diagnosis before age 50 or strong family history of cancer often warrants genetic testing.

T2b: Have you had genetic testing? What influenced your decision? If yes, did you have a genetic counselor?

• T2 #Gyncsm: Family history of #ColonCancer, brother tested positive for #Lynchsyndrome. Having a child influenced decision, and yes! 
• T2 My gyn onc spoke to me about genetic testing. I then talked to a genetic counselor re: my "pedigree" and she recommended the test
• T2 yes had genetic testing. Breast & ovarian cancer in family. #brca mutation 3 generations 

T3: Which genetic mutations are known to increase risk for gyn cancers? Do these mutations also impact risks for other cancers?

• T3 At least 24 genes are associated with ovarian cancer risk. Several have uterine cancer risk.
• T3 A genetic counselor can help determine the best test based on your personal and family history. #gyncsm @GeneticCouns 
• Many more than BRCA1/2! Lynch syndrome is colon, uterine, ovarian, stomach cancer, etc... Talk to a GC if you are concerned! #gyncsm 
• T3 Many mutations associated with Gyn Cancers: BRCA 1/2, Lynch Syndrome, Cowdens' Syndrome. Li Fraumeni . Often other cancers too.
• T3: Many people, even PJS patients, don't know that Peutz-Jeghers Syndrome adds risk for gyn or breast cancer

T4a: How can people access genetic counseling? What prep work is needed? Are referrals required?

• Find a Genetic Counselor near you at https://t.co/JHZReh6ReE #gyncsm @GeneticCouns 
• Most large programs have a cancer genetics counselor within the program. Ask your doc for a referral. 
• My @GeneticCouns blog will help you prepare for a genetic counseling visit. https://t.co/murxf0ekQH
• Before a #geneticcounseling meeting, discuss #familyhealthhistory with relatives. Learn type of #cancers & age at diagnosis. 
• Knowing who in the family had what type of cancer diagnosed at what age is helpful for proving pts w/cancer risk assessment.

T4b: Does insurance cover genetic counseling? Are there protections against discrimination based on genetic test results?

• Most but not all insurance covers both the genetics consultation and the testing 
• GC for BRCA1/2 testing is often covered as preventive service as per the Affordable Care Act. Check your policy for details. 
• Talk to your GC/MD about testing options--if cost is a barrier, there may be financial assistance available to help! 
• Risk of genetic discrimination is very low. Often far outweighed by info gained from genetic testing. Talk to a GC!
•  Life insurance is a HUGE problem , not protected under #GINA. Seek coverage PRIOR to genetic counseling/testing. 

T5a: Let's talk about the term "risk". If mutations are found that increase my cancer risk, what does that really mean for me?

• Everyone has a chance of developing cancer. Having a mutation raises the chance above the general population.
• #Cancer risk is not the same with all genes. Some genes confer low, medium or high risk.
• An average woman has a 1.5% chance of developing ovarian cancer. BRCA1 mutation raises chance to 45%. Lynch 4-24%. 
• Some women will consider surgery to decrease their cancer #risk. Speak to a @GeneticCouns to discuss your cancer

T6: Where can those with a genetic mutation find the latest info and get help weighing options for preventative action or treatment?

• @GeneticCouns has resources. Talk to a genetic counselor to help gather current info tailored to you. https://t.co/6DC5QzpmDQ
• We recommend people see only CGC Certified Genetic Counselor
• Where can you find the latest info and get help w options for prevention or treatment? A genetics counselor!

T7: How and when to share test results with family can be tough. What are some tips?

• My blog on @PearlPoint has tips for you to share your #familyhealthhistory https://t.co/DR2P3XsZx8 https://t.co/QLOX0VlPiC
• we did a #family #bulletin email. For immediate family we had a get together https://t.co/obGa83KFTr 
• Find out what tests will help, and if there is any specialized treatment, before scaring yourself or others with yr Dx.
• Sharing Genetic Testing is covered with CGC'S Certified Genetic Counselor they have templates for letters & conversations 
• I encourage families to share information to help protect health. Sharing empowers relatives.

If you would like to continue this discussion, feel free to join us on Smart Patients at https://www.smartpatients.com/gyncsm.

Be sure to mark your calendar for our next chat on Wednesday, April 10  at 9pm ET as we discuss Re-envisioning Ovarian Cancer Survivorship. Our guests will be Dr. Don S. Dizon (@drdonsdizon) and Dr. Teresa Hagan ( @TLHagan). We hope to see you then.

Dee

#gyncsm co-moderator

RESOURCES:

Find a Genetic Counselor near you at https://t.co/JHZReh6ReE

@GeneticCouns blog will help you prepare for a genetic counseling visit. https://t.co/murxf0ekQH

Is Genetic Testing Necessary- http://www.bustle.com/articles/146564-is-cancer-genetic-testing-necessary-7-things-you-should-know-about-getting-a-screening

@BeBrightPink Collect Family History  https://t.co/S8JvCebcpE

SGO position statements on genetic testing https://www.sgo.org/newsroom/position-statements-2/genetic-testing-for-gynecologic-cancer/

Surgeon General's Family Health History Initiative https://t.co/0ynYRl339L

Genetic Discrimination information https://t.co/xJhGNF7VnZ 

GENETIC TESTING, PRIVACY AND DISCRIMINATION https://t.co/x2Z1aTACg1

https://t.co/o8hs49pDGn genetic discrimination laws and protections

OCS:Development of the Risk of Ovarian Cancer Algorithm and RoOCA Screening Trials http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572791/

Hereditary cancer risk resources: @FacingOurRisk @BeBrightPink @Sharsheret @Hc_chat @BRCAinfo @BRCAresponder 

@ShewithLynch @MyGeneCounsel @LguzzardiM 

Communicating genetic test results: https://t.co/waFU48JsXi

After receiving +test results https://t.co/ROLi0rlFbc via Cancer Communication Research University of South Florida 

Oct 9,2013 Genetics and Personalized Medicine Chat https://t.co/T0ZjaCI4Bg

Genetic Testing and Ovarian Cancer  #gyncsm Community: https://t.co/uMVhorzjFa 

Genetic Counseling - Understanding Genetics - NCBI Bookshelf  https://t.co/Zi3UwQpRoE

Genetic Counseling Infographic  https://t.co/SZKjfF1caj 

March 9, 2016 Genetic Counselors and Understanding Gyn Cancer Risk

We are thrilled to be welcoming the leadership of the National Society of Genetic Counselors (@GeneticCouns) as our guests during the March 9, 2016 chat beginning at 9pmET (8CT/6PT). In July 2015 we shared on this blog a post titled, "Genetic Testing and Ovarian Cancer", which first appeared on the NSGC website. This month we will be expanding on that post and will be chatting about the role of genetic counselors in all gynecologic cancers as well as gynecologic cancer risks.

The topics questions are:

T1: What is genetic counseling and why it is recommended prior to genetic testing?

T2a: Who should consider genetic testing? How does it help those already diagnosed with a GYN cancer? Does it impact treatment plans?

T2b: Have you had genetic testing? What influenced your decision? If yes, did you have a genetic counselor?

T3: Which genetic mutations are known to increase risk for gynecologic cancers? Do these gene mutations impact risks for other cancers?

T4a: How can people access genetic counseling? What prep work is needed? Are referrals required? 
T4b: Does insurance cover genetic counseling? Are there protections against discrimination based on genetic test results?

T5a: Let's talk about the term "risk". If mutations are found that increase my cancer risk, what does that really mean for me? 

T5b: For those who have had genetic counseling and/or testing, how did the results impact your health care?

T6: Where can those with a genetic mutation find the latest info and get help weighing options for preventative action or treatment? 

T7: How and when to share test results with family can be tough. What are some tips?

If you would like to read more about genetic counselors and genetic testing check out these sites:

National Society of Genetic Counselors

NCI: Genetic Testing for Hereditary Syndromes Cancer 

We look forward to you joining us!

Dee

Co-moderator

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/