Vaccines in Cancer Care and Risk Reduction January 9, 2019

For our first chat of 2019, we had twenty-eight participants discussing Vaccines in Cancer Care and Risk Reduction. You may find the transcript here and additional analytics here.

Some responses to our questions may be found below.

T1: What vaccines are available before you develop cancer to reduce your risk? Are there different types? 

• T1 The #HPV vaccine is cancer prevention for six cancers-cervical, vaginal, vulvar, penile, & oropharyngeal. #gyncsm
• T1: Cancers that are caused by viruses can be vaccinated against. HPV vaccine protects against cervical and other HPV-related cancers. The HepB vaccine can help protect against liver cancer
• the #HPVvaccine has been available since 2006 -- initially it offered protection against HPV16 and HPV18, the types of HPV that causes 70% of #cervicalcancer #gyncsm
• the FDA approved Gardasil 9 in 2014 -- which protects against another 20% of the most dangerous subtypes of #HPV #gyncsm 

T2: What cancers can be caused by HPV? How does the HPV vaccine reduce the risk of HPV-related cancers?

• T2 Cervical, vaginal, vulvar, anal, penile, & oropharyngeal cancers are caused by HPV. Every year in the US, HPV causes 33,700 cancers in men and women
• #HPV can cause #cervicalcancer and some types of ear-nose-and-throat, vulvar, vaginal, penile, and anal cancer. The CDC recently release a report about trends in HPV-related cancers. #gyncsm cdc.gov/mmwr/volumes/6…
• T2 -- interestingly, in recent years oropharyngeal cancers are now the most common type of HPV-related cancer. #HPV #gyncsm
• T2 The HPV vaccine protects against an HPV infection-persistent infection can lead to cell abnormalities & cancer.
• T2: It takes a long time for a persistent HPV infection to cause cervical disease and pre-cancer. The vaccine helps keep the body from being infected after exposure. Approx 80% of people are exposed to HPV at some point in their life
• It's better to get vaccinated before exposure to #HPV - that way your body is already immune!
• A2 from @cochranecollab Among women aged 15 to 26 years, vaccines reduced the risk of cervical precancer associated with HPV16/18 from 341 to 157 per 10,000. HPV vaccination reduced also the risk for any precancer lesions from 559 to 391 per 10,000.

T3: What are the current U.S. recommendations for HPV vaccination? Who should get vaccinated, when and how many doses?

• T3 The HPV vaccine is recommended for all girls & boys who are 11 or 12 years old. The series can be started as young as 9 years. #gyncsm
• T3 -- currently the @CDCgov suggest offering vaccination for boys and girls starting at age 9, and recommends it starting at age 11-12.
• T3 -- however, in October 2018 the @US_FDA has approved the use of Gardasil 9 for men and women up to age 45. #hpvvaccine #hpv #gyncsm https://www.statnews.com/2018/10/06/fda-expands-hpv-vaccine-use-to-age-45/
• And Vaccines for Children (VFC) Program offers vaccines ( including HPV) at no cost for eligible children cdc.gov/vaccines/progr…
• Yes -- for individuals who start the vaccine series younger than age 15, two shots of the #hpvvaccine is recommended.
• The @HPVRoundtable has a bunch of great parent materials.
• You can also check out yesterday's tweet blast by @StopHPVCancer for some great HPV resource links 

T4: What are cancer treatment vaccines? How do they work? When are they used - after front-line?

• T4: There are cancer vaccines that can be created the patient's own tumor! They have been explored in #ovariancancer as a maintenance strategy after primary treatment #gyncsm
• Specific #HPVVaccines are being combined with #immunotherapy to treat #cervicalcancer and head and neck cancers @MDAndersonNews
• T4: "Cancer treatment vaccines boost the immune system's ability to recognize and destroy antigens. Often, cancer cells have certain molecules called cancer-specific antigens on their surface that healthy cells do not have." https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines
• T4: Some cancer vaccines are made from the person's tumor sample for them. Other cancer vaccines target specific cancer antigens and are given to people whose tumors have those antigens on the surface of the tumor cells.
• T4 this article talks of the steps producing the vaccine Provenge for prostate cancer and examples of types of cancer vaccines. #gyncsm historyofvaccines.org/content/articl…   

T5: In which gynecologic cancers are treatment vaccines being studied? Has there been progress in this area?

• I found 15 clinical trials when I searched on clinicaltrial.gov for ovarian cancer vaccines https://clinicaltrials.gov/ct2/results?term=vaccine&cond=Ovarian+Cancer&Search=Apply&recrs=a&age_v=&gndr=&type=&rslt=
• Results from one #ovariancancer trial last spring via @ocrahope ocrahope.org/2018/04/vaccin…
• Cancer Vaccines in Ovarian Cancer: How Can We Improve? gives overview of research being done in this area in 2016 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251/
• T5 -- to me, it seems that the most progress with vaccines as a treatment strategy has been in #ovariancancer. There certainly is a lot of interest in this area given the innovation in #immunotherapy #gyncsm cancertherapyadvisor.com/gynecologic-ca

Additional resources shared during the chat may be found at the end of this post. 

Be sure to join us next month on February 13, 2019 at 9pm ET for our chat "Getting Into a Clinical Trial". 

You can also join us for a collaborative chat across all #cancer communities presented by #LCSM this Thurs Jan 10th at 8pm ET/5pm PT on "Immunotherapy: What Patients Need to Know". More here: https://lcsmchat.com/2019/01/06/lcsm-chat-2019-01-06-immunotherapy-what-patients-need-to-know/ 

And on January 16 at 9pm ET join the #CervivorChat (@IamCervivor) for support and discussion about HPV and cervical cancer. 

See you there!

Dee
Co-moderator #gyncsm Chat

RESOURCES: 

Trends in HPV 
https://www.cdc.gov/mmwr/volumes/67/wr/mm6733a2.htm

Hepatitis B Vaccination : What Everybody Should Know 
https://www.cdc.gov/vaccines/vpd/hepb/public/index.html 

Recap from our #gyncsm Feb 2017 chat on HPV and Cervical Cancer 
http://gyncsm.blogspot.com/2017/02/hpv-and-cervical-cancer-chat-2817.html

@theNCI site 
https://www.cancer.gov/about-cancer/causes-prevention/risk/infectious-agents/hpv-vaccine-fact-sheet 

HPV vaccine: A smart way to protect kids from cancer @jburzawa
https://www.mdanderson.org/publications/cancerwise/hpv-vaccine-a-smart-way-to-protect-kids-from-cancer.h00-158830434.html 

American Academy of Pediatrics - HPV 
https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/adolescent-sexual-health/Pages/HPV.aspx 

Vaccines for Children (VFC) Program 
https://www.cdc.gov/vaccines/programs/vfc/parents/qa-detailed.html 

NCI-designated Cancer Centers Urge HPV Vaccination for the Prevention of Cancer http://www.cinj.org/sites/cinj/files/documents/NCI_HPV_Consensus_Statement_012716.pdf 

Cancer.Net 
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines

Phase 2 Trial on HPV Indications 
http://ir.inovio.com/news-and-media/news/press-release-details/2018/Inovio-Announces-Initiation-of-Phase-2-Trial-in-New-HPV-Indications/default.aspx

Cancer Vaccines in Ovarian Cancer: How Can We Improve? 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5344251

Nov 8, 2017 #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we put the spotlight on Cancers of the Uterus. We discussed risk factors, symptoms and treatments of endometrial / uterine cancers as well as uterine sarcomas. 

We were pleased to have 24 participants join us including the Peach Society an organization devoted to raising awareness of endometrial cancer. 

You may find a complete transcript here and more analytics here. 

The following are some sample responses to out topic questions. You may find additional resources shared with the community at the end of the post. 

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role? 

• Risk factors for uterine cancers from @cancerdotnethttps://t.co/wptvJ7lIGE
• T1: uterine/endometrial cancer risks include: Age, obesity, reproductive history, hormone therapy, as well as genetics
• T1: #endometrialcancer is the malignancy most closely associated with obesity. Of course genetics #Lynch can play a role as well.
• About 3% of endometrial cancer is due to a hereditary cause, called Lynch syndrome. If you have a family history of endometrial and colon cancers,you may want to meet w/ a Genetic Counselor to learn more  
• T1: some of the genetic links are Lynch syndrome (up to 60% risk), Cowden syndrome (up to 30% risk), and a small risk with PJS
• All of these factors increase systemic estrogen which is implicated in the most common types of #endometrial cancer. 

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

• T2: Any vaginal bleeding after menopause is uterine cancer until proven otherwise.
• T2 Via Canadian Cancer Society Signs and symptoms http://www.cancer.ca/en/cancer-information/cancer-type/uterine/signs-and-symptoms/?region=on&utm_content=buffere910b&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
• @OncLive: Dr. Haldorsen on the Role of Imaging in the Diagnosis of Endometrial Cancer  http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer
• My main symptom included abnormal bleeding.

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects? 

• @CancerDotNet website : surgery/radiation/ chemotherapy https://www.cancer.net/cancer-types/uterine-cancer/treatment-options
• T3 Most are treated surgically with up to 50% receiving radiationa as well. 10-20% receive chemotherapy.
• T3: We discussed radiation oncology during our July 2017 #gyncsm chat - recap and resource links: http://gyncsm.blogspot.com/2017/06/radiation-oncology-what-is-it-when-is.html
• Post treatment side effects are related to the type and intensity of treatments used
• vaginal brachytherapy is a kind of radiation treatment

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

• Sarcomas are more rare, and often more aggressive. They often start in the muscle tissue of the uterus
• T4: Uterine Carcinosarcoma (formerly called MMMT) - info: http://gcsproject.org/carcinosarcoma-facts/
• T4: Leiomyosarcoma is a rare type of uterine sarcoma.
• T4: Endometrial Stromal Sarcoma - Info: http://ess-sarcoma.com/
• T4 : Brittany Sullivan’s Story w/ Sarcoma https://connection.asco.org/magazine/society-member-news/conquering-sarcoma-clinical-research-doctor-and-her-patient-are-paving

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

• T5: For all the gynecologic cancers, @GYNCancer (The Foundation for Women's Cancer (FWC)) had great guides and resources.
• T5: Resource | Foundation for Women's Cancer (2017): Endometrial Cancer - Your Guide http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Endometrial-Cancer-Your-Guide-website.pdf
• For support some great organizations like @CancerSupportHQ and for one on one support @CancerHopeNet are two I would recommend.
• Short overview of uterine cancer via @gyncancer http://www.foundationforwomenscancer.org/category/blog/uterine-cancer/
• @Peach_Society: You can get more information at http://www.peachsociety.net/ 

Please join us next month on Wednesday, December 13, 2017 (9pm ET/ 8pm CT / 6PM PT) for a chat on  I've Survived - Dealing with Side Effects and Other Losses

Wish all the members of our community a very Happy Thanksgiving!

See you in December. 

Dee
Co-founder #gyncsm 

RESOURCES

@MayoGynecology video obesity and endometrial cancer https://t.co/rJcT0ryuRL

Peach Outreach symptom cards, visit: http://peachoutreach.com/symptomcards/

Imaging and endometrial cancer diagnosis http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer

Nov #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we will be putting the spotlight on Cancers of the Uterus or Cancers of the Womb as it is called in the United Kingdom. We will discuss risk factors, symptoms and treatments of endometrial / uterine cancers. We will also discuss uterine sarcomas and how they differ from other cancers in presentation and treatment.

Guiding our discussion will be the following Topic Questions:

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role?

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects?

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

You will find helpful information on this month's topic in a booklet produced by the NCI What You Need to Know About - Cancer of the Uterus. 

We look forward to you joining us on Wednesday, November 8, 2017 at 9pm ET (8pm CT, 6pm PT).

Dee
#gyncsm Co-founder


Related Chats:
Radiation Oncology - What is is? When is it used? 2017
You never heard of Primary Peritoneal Cancer and Gestational Trophoblastic Disease? 2017
Gyn Cancer Awareness Month and Spotlight: Uterine and Endometrial Cancers 2015
 

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 

She Has Lynch Syndrome

March is Colorectal Cancer Awareness month. Lynch syndrome also called hereditary nonpolyposis colorectal cancer (HNPCC) is associated with colorectal cancer but many are unaware that the syndrome is also associated with endometrial cancer and ovarian cancer. Women with Lynch syndrome have a 21-71% risk of endometrial cancer and a 3-14 % risk of ovarian cancer. Additional information regarding surveillance, risk reducing surgery, etc. may be found on the Up To Date website at: http://www.uptodate.com/contents/endometrial-and-ovarian-cancer-screening-and-prevention-in-women-with-lynch-syndrome-hereditary-nonpolyposis-colorectal-cancer.

Georgia Hurst, who was diagnosed with Lynch syndrome in 2011, is an advocate, daughter and sister of colon cancer survivors. She choose to have risk reducing surgery and following that experience started writing the I Have Lynch Syndrome website. The website's mission is "to address the possible plethora of emotional implications of a Lynch diagnosis and to encourage those that may at be at high risk to get genetically tested." We are happy to share a blog post written by Georgia for her blog in June 2013.

Christina and I would like to thank Georgia for her support of the #gyncsm community.

How to be happy after a Lynch diagnosis

I got slapped with my Lynch diagnosis on May 17, 2011. I had my radical hysterectomy on June 10, 2011 and spent the last couple years trying to figure out how to reconcile living with this emotional aspects of this genetic monster. I had to undergo lots of therapy, meds, acupuncture, meditation, books, spending time with friends, exercising, and participating in life affirming activities in order to start feeling better.

Lynch is not something you can only fret about during your annual screenings; it’s something that you must be mindful of every day. Most things I do are for my betterment, to improve or sustain my good health, and if it’s not good for me physically or emotionally, then it doesn’t get to be in my life.
Here is my list of things to do to live a happy life following a Lynch diagnosis.

1. Decide what prophylactic measures you will take/or not and then deal with that. I felt the need to take control immediately following my diagnosis and scheduled my hysterectomy. Learn all you can about Lynch; become your own health advocate and get screened religiously.

2.  Think about most things that you put into your mouth. Will it nourish you or eventually end up destroying you? Do you need to alter your diet and include more fruits and veggies and less animal products? Your diet does play a role in cancer’s development. Drink more green smoothies and be sure to incorporate things such as kale, spinach, green apples, green tea, and chia seeds into your diet. Let thy food be thy medicine!

3. Workout at least five days a week. I’ve been running for years but now I need it more than ever; first for the endorphins, second because I want to be as trim and fit as possible. Lift weights –  for me, physical strength holds implications for my mental strength. You must make exercise a priority in your life. Period.

4. Spend time with people who teach you, nourish you, love you, and are willing to listen to you. Get rid of the toxic people in your life – you have enough crap to deal with – eliminate them and make room for more positive people in your life.

5. Spend time cultivating your spirituality. I meditate – a lot, usually for an hour. Pray, meditate, whatever it is that you do and do it more frequently. Talk to yourself and tell yourself that you’re healthy, strong, and that you will not allow for cancer to manifest itself into your body. Breathe deeply. Repeat.

6. Read books about death and happiness. It’s amazing what profound words some books have written in them. I’m partial to Buddhist philosophy; it’s helped me immensely with dealing with my death anxiety. Also, reading about other people’s life issues provides you with perspective on your own life and makes you realize how fortunate you are in many ways.

7. Spend time in nature. Go for a walk, go to the beach, garden, spend more time outside. It works wonders for the soul.

8. Do at least one thing that makes you feel good every day. Period.

9. Cater to your inner child. Do things you’ve always wanted to do and keep putting off. I recently built an eight foot teepee in my basement – I’ve always wanted one since I was a kid. Are you going to wait until you’re sick and old to do them? Do them now.

10. Express gratitude, every day. Count the things that you’re grateful for and remember there is someone always worse off than you.

11. Limit your time on FB Lynch and cancer platforms. They can be highly depressing and cause your optimism regarding your own health to wane. You know you have Lynch and can take preventative measures to fight it; many of those who are suffering from cancer did not know they had Lynch until it was too late. Keep that in mind when reading their stories. You’re one of the lucky ones!

12. Make your home your sanctuary; I have peaceful looking Buddhas about the house, upbeat music playing, candles burning, and flowers in my home. It’s hard to be depressed in a lovely, calm environment.

13. Have something to take care of every day. Adopt a dog or cat from the shelter. Get a fish. Get some plants. Having living things that need to be cared for by you gives you more purpose.

14.  Leave your mark and/or create something. Do something that makes you feel as though you’ve made a difference. You don’t need to win the Noble Peace Prize, but do something you can be proud of; for me it’s been this blog and my advocacy work.

15. Connect with others who have Lynch and are not sick. Just remember, you’re not alone. If you can’t find anyone else, zap me an email, I’d be happy to talk to you.

16. Stop worrying about others in your family and whether or not they’ll be screened. You cannot control anyone but yourself. All you can do is set an example for them.

17. Be happy; if you’re doing every thing you can, exhausting all of your options, getting screened, and taking care of yourself, you should gain some solace from all of this.


And she’s off.
Namaste.
Georgia

Dee
#gyncsm Co-moderator