Following Angelina Jolie Pitt’s disclosure earlier this week that she recently underwent a prophylactic bilateral salpingo-oophorectomy, we held an impromptu Tweet chat to discuss hereditary cancer and risk management. The BRCA community has certainly been lucky to have an advocate with a celebrity voice helping to spread awareness by sharing her personal story. But it’s just that – a personal story. Each member of a family with a genetic predisposition to cancer has their own take on the issue.
Our hope with this chat was to open the floor to as many of these voices as possible, because sharing stories saves lives. Here are some of the different experiences we heard about in Tuesday’s discussion.
Genetic counseling:
#Hcchat Isn’t the first risk management decision to see a genetic counselor once a #hereditarycancer is suspected?
— Linda Zercoe (@lindazercoe) March 25, 2015
@lindazercoe It certainly should be. Unfortunately, many patients are never referred to a certified genetic counselor. #hcchat
— MyGeneCounsel (@MyGeneCounsel) March 25, 2015
Connecting with genetic counselor has been surprising challenge. Need easier access to resources! #BRCA#Hcchat#Lynchsyndrome — Stephanie Quinn (@QuinnWordWoman) March 25, 2015
@QuinnWordWoman Sorry to hear that! There are also phone services available — we will post resources. #Hcchat — MyGeneCounsel (@MyGeneCounsel) March 25, 2015
Thoughts on Angelina Jolie’s Op-ed piece:
@BRCAresponder ANYONE who can get this conversation going all over the internet, media, water cooler, etc deserves to be applauded. #Hcchat — Men Have Breasts Too (@MHBTmovie) March 25, 2015
Good when celebs open the conversation and local regular people get coverage too. Make sure everyone knows it’s an option for all. #Hcchat — Rose McMunn West (@westwordrose) March 25, 2015
@FlaIvoryGirl#Hcchat she said she feels feminine, grounded in the choices she is making for herself and her family. #AngelinaJolie
— Amy Byer Shainman (@BRCAresponder) March 25, 2015
#Hcchat Angelina’s op-ed piece was better than last. Acknowledged others. More human – I thought. Grt 4 #BRCA awareness — Linda Zercoe (@lindazercoe) March 25, 2015
Mastectomy,Hysterectomy and Oophorectomy
#Hcchat: Some past blogs about my experience with my #Hysterectomy and #Oophorectomy: http://t.co/s56VLHU6V5
— Georgia Hurst (@ShewithLynch) March 25, 2015
I had my ovaries out at 40 because of red flags. Elevated ca-125. Lost mom at age 56. #BRCA1 couldn’t get em out fast enough #Hcchat — Melanie (@melly_boo94) March 25, 2015
More resources:
#Hcchat Here is @fredhutch article that just came out…I was fortunate enough to contribute http://t.co/SZkaX1ncTn#AngelinaJolie#BRCA
— Amy Byer Shainman (@BRCAresponder) March 25, 2015
We have a new #hereditarycancer brochure available that provides some basic info #BRCAhttp://t.co/8IDHpEVV9z#HCChatpic.twitter.com/4unDFPUN1Y — CenterJewishGenetics (@jewishgenetics) March 25, 2015
Final thoughts:
Agreed! RT@Vcostello_GC: #Hcchat thank you to all who participated & shared their personal experiences– starting the conversation is key .
— CenterJewishGenetics (@jewishgenetics) March 25, 2015
#HCchat The more we have these chats, the more informed we all become! — PINK AND BLUE MOVIE (@pinkandbluedoc) March 25, 2015
Read the full transcript here or search #Hcchat on Twitter. Have a story you didn’t get to share? Please post in the comments below.
Don’t forget to follow us on social media to get notifications about upcoming Tweet Chats and other news. Also make sure to follow our amazing co-hosts @Shewithlynch and @BRCAresponder.