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

Hereditary Breast and Ovarian Cancer Week

[posted updated 9/2016, 9/2017, 9/2018]

The #gyncsm community has chatted about gynecologic cancer risks, the genetics of cancer (Genetics and Personalized Medicine), Genetic Counselors and Understanding Gyn Cancer Risk and Hereditary vs Somatic Mutations. HBOC week gives us another opportunity to share resources and information on hereditary ovarian and breast cancers.

About 15% of the ovarian cancers diagnosed are due to germline (inherited and passed on to offspring) mutations in the BRCA1 and BRCA2 genes. Having these mutations increases the risk of ovarian cancer by 15-50%. “Nearly one-third of women with hereditary ovarian carcinoma have no close relatives with cancer, and 35% of women with hereditary ovarian carcinoma are older than 60 years at diagnosis”(NCI). 

The Society of Gynecologic Oncology released a Clinical Practice statement in 2014 stating that all women diagnosed with ovarian, tubal and primary peritoneal cancer regardless of age or family history should receive counseling and be offered a genetic test. (https://www.sgo.org/clinical-practice/guidelines/genetic-testing-for-ovarian-cancer/)

F.O.R.C.E. (Facing Our Risk of Cancer Empowered) has played a crucial role in raising awareness, providing information and supporting research into hereditary breast and ovarian cancers. "The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease."

We hope you find these resources helpful. 


Hereditary Cancer Resources:
Bright Pink
www.bebrightpink.org
F.O.R.C.E. (Facing Our Risk of Cancer Empowered)
http://www.facingourrisk.org/
Sharsheret
http://www.sharsheret.org/
BRCA Mutation
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
Lynch syndrome
http://www.cancer.net/cancer-types/lynch-syndrome
Cowden syndrome
http://www.cancer.net/cancer-types/cowden-syndrome
Li-Fraumeni syndrome
https://www.lfsassociation.org/what-is-lfs/
Peutz-Jeghers syndrome
https://www.cancer.net/cancer-types/peutz-jeghers-syndrome



Genetics: 
National Society of Genetics Counselors http://nsgc.org/
Find a Counselor Tool: http://nsgc.org/p/cm/ld/fid=164


Dee
#gyncsm Co-Founder 

Genetic Testing and Ovarian Cancer

Genetic Testing and Ovarian Cancer originally appeared as a blog post on the National Society of Genetics Counselors (NSGC) website on Mar 23, 2015. It was written by Leigha Ann Senter-Jamieson, MS, LGC. Thank you  NSGC and Liegha Senter-Jamieson for allowing us to share this important information with the #gyncsm community.  




As a genetic counselor specializing in ovarian cancer, I was heartened to learn about a recently approved chemotherapy treatment for women with a type of inherited ovarian cancer. In December, the US. Food and Drug Administration granted accelerated approval of Lynparza (also known as olaparib) for women whose ovarian cancer is caused by an inherited mutation in the BRCA1 or BRCA2 gene. Currently, this treatment is only for women whose cancer has failed to respond to three other types of chemotherapy.

Precision Medicine

This is an exciting example of how our understanding of the role of genetics in cancer is advancing the field of precision medicine, and bringing hope to women with ovarian cancer or anyone with a cancer that’s resistant to many of our standard treatments.

If you or a close relative has ovarian cancer, you may want to learn more about this treatment option, and consider genetic testing and genetic counseling. Genetic counseling both before and after the test is key.

What Genetic Testing Can Tell You

Genetic testing for ovarian cancer can provide information beyond whether a specific type of chemotherapy might be effective. It can tell you whether your particular type of cancer is hereditary and whether your close relatives, men included, may be at increased risk for developing ovarian cancer or other cancers, and whether they should consider being tested. Data suggest that up to 15 percent of women with ovarian cancer have a BRCA1 or BRCA2 mutation. These genes are associated with a 50 percent to 80 percent lifetime risk of breast cancer and a 20 to 40 percent lifetime risk of ovarian cancer in women, as well as an increased risk for breast cancer in men. These cancer risks are much higher than the risks faced by the general population. Because of this, women with the BRCA gene mutations are advised to begin cancer screenings at an earlier age and have them more often. Some women also consider having surgery to remove their ovaries or their breasts, which significantly lowers their risk of developing cancer. Since men may also inherit a BRCA1 or BRCA2 mutation, genetic testing is important for male relatives to consider as well since their screening would be adjusted if they were found to have the mutation.

Genetic counseling both before and after [genetic testing] is key.

While BRCA1 and BRCA2 mutations are the most common causes of hereditary ovarian cancer, there are less common genetic causes of the disease. In fact, many women with ovarian cancer now choose to have more extensive genetic testing utilizing what is often referred to as multi-gene panel testing. These tests analyze many genes at once and often include the BRCA genes. Multi-gene panels usually include other well-known genes that are less commonly associated with ovarian cancer risk. For some of the genes included in these tests, there are no published guidelines regarding cancer screening so it’s up to your cancer genetics care team to design a screening plan based on the available data.

The Role of Genetic Counseling

The information provided by genetic testing can be extremely useful, but it can also be overwhelming. A genetic counselor can help you decide which genetic test is right for you, guide you through the test results and what they mean for you and your family, and help you consider your options for screening, prevention or treatment.  
If you’d like to speak with a genetic counselor, you can locate one in your area using NSGC’s “Find a Genetic Counselor” tool.


Leigha Senter-Jamieson, MS, LGC is a member of the National Society of Genetic Counselors 2015 Board of Directors and is associate professor in the Division of Human Genetics in the Department of Internal Medicine at The Ohio State University



Dee
Co-moderator #gyncsm