Tweetchat

Genetic Counselor Awareness Day Tweetchat

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To celebrate the first Genetic Counselor Awareness Day on November 9th, the National Society of Genetic Counselors (NSGC) hosted a tweetchat, #IAmAGenticCounselor. Genetic counselors shared their inspiration to join the field, their respective roles and advice to prospective students. Check out some highlights below!

We also recapped NSGC's awareness day webinar presented by our CEO/President, Ellen Matloff.

Want to read and join in on the genetic counseling conversations on Twitter? Subscribe to our Twitter list with over 460 genetic counselors and institutions! If you are a genetic counselor and not yet on the list, email us to be added!

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#NSGCGenePool First Annual TweetChat

The National Society of Genetic Counselors (NSGC) has launched the NSGC Digital Ambassador Program (#NSGCGenePool) to bring together social media influencers in the genetics field. The group consists of 15 ambassadors, including our President/CEO, Ellen Matloff. These ambassadors each have a unique perspective and knowledge in various areas of genetics and genetic counseling. The goal of this new program is to help raise awareness about the role of genetic counselors and to promote interest among their networks. 

Colleen Caleshu led our first TweetChat on Thursday, May 25th, and we were joined by many other Digital Ambassadors as well. Check out the highlights of our conversation below! Want to read the entire discussion? Here's the transcript.

Have a question or comment you didn’t get to contribute? Please post in the comments below or tweet using the hashtag, #NSGCGenePool. 

Keep up with upcoming discussion and other genetics news by following us on Twitter and Facebook along with our fellow NSGC Digital Ambassadors: 

@BRCAresponder @brochman @GCBrianne @colleencaleshu @dawallach @AliveAndKicknDD @womenofteal @ShewithLynch @Genomeducator @DrKhouryCDC @GeneticsRebekah @RobertCGreen @chicagogenetics

 

TweetChat: Lynch Syndrome And Other Hereditary Colon Cancer Syndromes

To conclude Lynch Syndrome and Colorectal Cancer Awareness Month, we held a tweetchat, #GenCSM, with our phenomenal co-hosts Georgia Hurst and Amy Byer Shainman and special guest Heather Hampel, MS, LGC. Hampel is a genetic counselor at The Ohio State University Comprehensive Cancer Center. Her research interests include screening all colorectal and endometrial cancer patients for Lynch syndrome. Here are highlights from our exciting and thought-provoking chat! You can also view the full transcript here, (thanks Amy Byer Shainman for compiling).

The conversation then opened up for participants to ask Heather Hampel questions and highlight important hereditary cancer points. 

Have a question or comment you didn’t get to contribute? Please post in the comments below or tweet your response with #GenCSM. Check back for our next tweetchat; we host every two months! While you wait, check out our highlights of previous tweetchats. 

Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our co-hosts @Shewithlynch and @BRCAresponder and our guest, @HHampel1

TweetChat: The Gene with Siddhartha Mukherjee

 Photo Credit:  New York Times

Photo Credit: New York Times

On Monday afternoon we held a tweetchat, #GenCSM, with our amazing co-hosts Georgia Hurst and Amy Byer Shainman and special guest Siddhartha Mukherjee, MD. Sid is the Pulitzer Prize-winning author of The Emperor of All Maladies: A Biography of Cancer, and his most recent book, The Gene, has been highlighted by Bill Gates and was the topic of much of our discussion. Here are highlights from our exciting and thought-provoking chat! You can also view the full transcript here.

...then the conversation opened up to questions from other participants. 

Have a question or comment you didn’t get to contribute? Please post in the comments below. Check back for our next tweetchat; we host every two months! While you wait, check out our highlights of previous tweetchats. 

Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our co-hosts @Shewithlynch and @BRCAresponder and our guest, @DrSidMukherjee

Discussion: Hereditary Cancer 101: What You Need To Know

On Monday night we held a Tweetchat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman and special guest Erica Ramos, Genetic Counselor at Illumina and President-Elect of the National Society of Genetic Counselors.  Here are highlights from the exciting chat! You can also view the full transcript here.

Discussion: Should We Test Minors For Hereditary Cancer Syndromes?

Last week we held a Tweet Chat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman to hear what our community had to say on the issue of genetic testing in minors. This is a controversial topic with no easy answers, and we were thrilled with the great turnout and information shared. Here are the highlights:

Question 1: Is genetic testing children generally a bad idea or a good idea for hereditary cancer syndromes? Why?

Question 2:  Which hereditary cancer syndromes are the exceptions to this? Why?

Question 3: What factors do we need to consider with the genetic testing of children?

Final thoughts: 

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More resources:

Read the full transcript here or search #Hcchat on Twitter. Have a question or comment you didn't get to contribute? Please post in the comments below.

Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our amazing co-hosts @Shewithlynch and @BRCAresponder.

Discussion: Immunotherapy and Lynch Syndrome Related Cancers

Yesterday we held a Tweet Chat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman, and special guest Stephanie Goff, MD, of the National Cancer Institute to discuss what you need to know about immunotherapy and Lynch Syndrome related cancers. We were also honored to be joined by Erin Mading, who recently lost her third child to cancer due to a rare syndrome, CMMR-D, associated with carrying two mutations for Lynch Syndrome.

Here are the highlights of the conversation. Have a question or comment you didn’t get to contribute? Please post in the comments below.

First off, what exactly is immunotherapy?

How does it work and how might it help patients with cancer?

Erin Mading provided an example of how immunotherapy was used as part of her daughter Isabella's treatment:

Where can people go to find out more about immunotherapy and clinical trials?

After giving us a general rundown of immunotherapy, Dr. Goff fielded a few questions from the audience:


Read the transcript  or follow #Hcchat on Twitter. Don’t forget to follow us to receive notifications about upcoming hereditary cancer discussions and other news. 

Discussion: The Next Big Things in the BRCA World

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hereditary-cancer-chat-HCchat

Last week we held a Tweet Chat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman, and special guest Timothy Rebbeck, PhD of the Dana-Farber Cancer Institute to discuss what's happening in the BRCA world. We had a wonderful, very informative conversation with our community. Here are the highlights of the conversation. Have a question or comment you didn’t get to contribute? Please post in the comments below.

Q1. How do you see #ProphylacticSalpingectomy working into the management plans of #BRCA carriers moving forward?

#Hcchat Q1 1/12: #Salpingectomy involves removing the #FallopianTubes while leaving the #uterus & #ovaries intact.

— Tim Rebbeck (@Vi8tor) October 28, 2015

#Hcchat Q1 4/12: A sizeable proportion of #SerousCarcinomas in #BRCA carriers may arise in the #FallopianTubes, — Tim Rebbeck (@Vi8tor) October 28, 2015

#Hcchat Q1 6/12: Optimal protocol for including #salpingectomy in a risk reduction strategy for #BRCA carriers is not clear at this time.

— Tim Rebbeck (@Vi8tor) October 28, 2015

@ksurkan exactly! Why were some fam members Dx much later, others younger & some not at all? External/environmental factors? #BRCA2#hcchat

— Nicki B. Durlester (@NickiDurlester) October 28, 2015

@ksurkan#hcchat the diagnosis of cancer is later in BRCA2 but we just starting to change recommendations based on these data — Tim Rebbeck (@Vi8tor) October 28, 2015

#Hcchat Q1 9/12: #Salpingectomy may be a useful interim solution for risk reduction but it may not replace the need for #oophorectomy

— Tim Rebbeck (@Vi8tor) October 28, 2015

Q2: What role, if any, do you think #PARPinhibitors will play in the treatment of #BRCA-related cancers in carriers?

#Hcchat Q2 1/7: #PARPinhibitors are drugs that inhibit poly ADP ribose polymerase & are useful in the treatment of BRCA-associated cancers.

— Tim Rebbeck (@Vi8tor) October 28, 2015

#Hcchat Q2 7/7: #Cancer prevention using #PARP inhibitors must assess the benefit vs. potential harms in #BRCA carriers. — Tim Rebbeck (@Vi8tor) October 28, 2015

Aren't there significant side effects to PARP inhibitors that should be studies b4 prevention use? #hcchat#BRCAhttps://t.co/FGq66NjEwn

— ksurkan (@ksurkan) October 28, 2015

@NickiDurlester@BRCAresponder@ksurkan@Vi8tor Scientists and patients learning from each other - this is how we make progress! #HCChat — Brave Bosom (@BraveBosom) October 28, 2015

Q3: Do you think #PopulationScreening for #HereditaryCancers will become reality w/in in the next decade?

#Hcchat Q3 2/10: #GeneticTesting should only be done when there is a clear benefit & limited harm. — Tim Rebbeck (@Vi8tor) October 28, 2015

#Hcchat Q3 4/10: Current #GeneticCounseling capacity is not likely to be adequate if population testing were available… — Tim Rebbeck (@Vi8tor) October 28, 2015

@Vi8tor still so many patients still not offered genetictesting after cancer diagnosis with #hereditarycancer factors #Hcchat

— Karen Lazarovitz (@karenBRCAMTL) October 28, 2015

@Vi8tor My concern is psychological impact on patients not prepared for ramifications of + testing results. #Geneticcounseling key! #Hcchat — Nicki B. Durlester (@NickiDurlester) October 28, 2015

Other questions:

@coffeemommy#hcchat Very important point. We need to separate 'negatives', 'true negatives' and 'uninformative negatives'.

— Ellen T. Matloff (@MyGeneCounsel) October 28, 2015

@KDeutsch@DanaFarber#hcchat Mutations in other genes appear to confer lower risks than BRCA1/2 but the data are early — Tim Rebbeck (@Vi8tor) October 28, 2015

Shouldn't there be more discussion about men & their #brca cancer risk? Don't hear much, or not nearly as much. @Vi8tor#hcchat

— Nancy's Point (@NancysPoint) October 28, 2015

@coffeemommy#hcchat Through medical education, and public education forums just like this one! Thanks for being a part of the solution. — Ellen T. Matloff (@MyGeneCounsel) October 28, 2015

Read the full transcript here or search #Hcchat on Twitter. Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our co-hosts @Shewithlynch and @BRCAresponder and special guest Timothy Rebbeck, PhD.

Discussion: Who Really Has Access to Genetic Testing?

hereditary-cancer-chat-HCchat
hereditary-cancer-chat-HCchat

Last week we held a Tweet Chat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman, special guest Sharlene Hesse-Biber, PhD and host Ambry Genetics to discuss a very important issue in genetic testing: Who really has access? As always, the response from our community of patients, advocates and others was overwhelming. Here are the highlights of the conversation.

Do you think most people can afford genetic testing?

@Hc_chat#hcchat Q1: In clinical practice we found that many people who were uninsured had a difficult time affording testing.

— Ellen T. Matloff (@MyGeneCounsel) September 9, 2015

#Hcchat in Greece genetic testing is not covered by the major health insurance provider and most people can't afford BRCA and LS testing.

— Emmanouil Saloustros (@esaloustros) September 9, 2015

@Hc_chat In the UK it is free on the NHS if you fit certain criteria, otherwise you can pay and prices varies #hcchat — BRCA Umbrella (@BRCAUmbrella) September 9, 2015

#hcchat Q1: Those who have insurance coverage have easier time. Those who have a high hereditary cancer risk in their family get tested

— Sharlene Hesse-Biber (@hessebiber) September 9, 2015

perception (sometimes true) that costs are prohibitive is a big issue #hcchat#genetictesting

— AliveAndKickn (@AliveAndKicknDD) September 9, 2015

What are the social barriers for the average person in regards to genetic testing?

@Hc_chat There is such a stigma in the African American community due to fear of what might be found. We don't want to know. #Hcchat — Candace Henley (@colon_survivor) September 9, 2015

That crosses communities! Education & counseling is key to change. #Hcchathttps://t.co/cueGiJmp6j

— Troy Moore (@TroyMoore4141) September 9, 2015

Q3 People feel there is a stigma attached to having a mutation. #Hcchat — BRCA Umbrella (@BRCAUmbrella) September 9, 2015

A3 barrier for me has been the legwork/uncomfortableness of talking w/ all the family members about their or their parent's cancer #hcchat

— Christina Lizaso (@btrfly12) September 9, 2015

#Hcchat Q3 Barrier…people simply don't know where to go--that the best 1st step is a genetic counselor #geneticcounseling@GeneticCouns — Amy Byer Shainman (@BRCAresponder) September 9, 2015

@colon_survivor@MyGeneCounsel@Hc_chat : #hcchat Q3: I found those with higher education are more likely to get tested and do research.

— Sharlene Hesse-Biber (@hessebiber) September 9, 2015

Is knowledge power when it comes to genetic testing?

Q4: #Hcchat: Most #doctors are not adequately trained in #genetics to advise you about your test result. — Sharlene Hesse-Biber (@hessebiber) September 9, 2015

Q4 - No because you are stuck with a problem and no solution! Living proof! #LynchSyndrome#LSChat#HCCHathttps://t.co/CbnsoobGSL

— Lee (@NJIvorygirl) September 9, 2015

#Hcchat For me, knowledge about my #Hereditarycancer syndrome was power. I was able to take actions to save my own life. #BRCA — Amy Byer Shainman (@BRCAresponder) September 9, 2015

#Hcchat For me, knowledge about my #Hereditarycancer syndrome was power. I was able to take actions to save my own life. #BRCA

— Amy Byer Shainman (@BRCAresponder) September 9, 2015

Q4 Often people who do not qualify for free testing will pay & get no counselling. ..left with results they can't interpret = fear #Hcchat — BRCA Umbrella (@BRCAUmbrella) September 9, 2015

Sharlene Hesse-Biber, PhD’s key takeaways:

  • Carrying a positive genetic mutation does not mean you have cancer now or will die. Rushing to preventative surgery may be problematic.
  • Genetic counseling is crucial to the genetic testing process.
  • Even if you develop cancer it’s not necessarily a death sentence.
  • Your particular mutation may hold implications for your treatment or clinical trials.

Read the full transcript here or search #Hcchat on Twitter. Have a question or comment you didn’t get to contribute? Please post in the comments below.

Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our co-hosts @Shewithlynch and @BRCAresponder and guest Sharlene Hesse-Biber, PhD.

Dr. Sharlene Hesse-Biber

Discussion: Precision Medicine Initiative

In the words of the National Institute of Health, precision medicine is an approach to disease treatment and prevention that accounts for individual variability in genes, environment and lifestyle. In simpler terms, precision medicine means using a tailored treatment approach for each person based on their actual disease, rather than a one-size-fits-all approach. The aim of President Obama’s Precision Medicine Initiative (PMI) is to make this type of healthcare the norm rather than the exception. There’s no doubt this is the future of medicine.  Since it was announced in January, PMI has received a ton of press, however many patients and advocates still have questions about how it actually works. Last week we took part in a Precision Medicine Initiative Tweet chat hosted by the National Institute of Health (@NIH) to help field some of these questions. The discussion was moderated by Kathy Hudson (@KathyHudsonNIH), NIH Deputy Director for Science, Outreach and Policy, and DJ Patil (@dj44), U.S. Chief Data Scientist at the White House Office of Science and Technology Policy.

Here are some of the highlights:

What is precision medicine and why does it matter?

Personal experiences with precision medicine as a patient or provider

Where will the data come from?

What work still needs to be done?

More reading

 

Read the full transcript here and follow the growing conversation using #PMINetwork on Twitter. Have a question or comment you didn’t get to contribute? Please post in the comments below.

 

Discussion: Men & Hereditary Cancer

In honor of Men’s Health Month and Father’s Day, we wanted to shine a light on an important issue that does not usually get much attention: men and hereditary cancer. Men are often told that they don’t need genetic testing, since the cancer risks only impact women. However, this is inaccurate because there are cancer risks for male carriers of every hereditary cancer mutation. Also, the sons and daughters of male carriers are at risk to carry a mutation, so learning if the father carries a mutation is critical.Misinformation has implications not only for individuals but for their entire families.

Last week we held a Tweet Chat with our amazing co-hosts Georgia Hurst and Amy Byer Shainman and special guests Alan BlassbergScott Anderson and Ben of The Buttfolio to hear what our community had to say on the issue.

Our audience shared a variety of personal experiences:

I am an oncologist at MD Anderson. And a man. With MEN (multiple endocrine neoplasia) #Hcchat

— Mark Lewis (@marklewismd) June 11, 2015

Dave Dubin, 3x Lynch Syndrome srvivr, founder AliveAndKickn, above average soccer player and coach #Hcchat — AliveAndKickn (@AliveAndKicknDD) June 11, 2015

Hi! This is Aishwarya, Genetic Counselor at the Center for Jewish Genetics & Lurie Children's Hospital of Chicago! #hcchat

— CenterJewishGenetics (@jewishgenetics) June 11, 2015

#hcchat Mike Roddie advocate for patient-centered #healthcare and health technology — Mike Roddie (@MikeRoddie) June 11, 2015

#Hcchat I am BRCA1+ with chronic bladder cancer #HereditaryCancer and BRCA impacts more than breast and ovarian cancers

— Ken Deutsch (@KDeutsch) June 11, 2015

Hi everyone! Happy to be joining #hcchat. I'm a member of the #lifraumeni syndrome community. Hoping more are joining! — Linda Zercoe (@lindazercoe) June 11, 2015

50% of those living with a hereditary cancer mutation are men yet no one is talking about it, including clinicians. Why should we be talking about it?

@MyGeneCounsel All the time. A huge problem with BRCA when people think it can’t cause breast cancer in men, or other tumors #Hcchat — Mark Lewis (@marklewismd) June 11, 2015

@lindazercoe Reminding men that they contribute half the genes! Fatherhood is not a spectator sport #Hcchat

— Mark Lewis (@marklewismd) June 11, 2015

Young black men more likely to die of #breastcancer than young white men. #hcchat Via @GoHealiohttp://t.co/WqxBhCL78Y — Lisa M Guzzardi, RN (@LguzzardiM) June 11, 2015

@lindazercoe#hcchat Same as in women. 1/43 of Jewish ancestry, ~1/400-1/600 general population. #BRCA

— MyGeneCounsel (@MyGeneCounsel) June 11, 2015

What is the most challenging aspect of having BRCA as a man?

@Hc_chat#Hcchat also I’ve come to accept that every 6 months I have to have a mammogram or MRI Routine colonscopy, dermatologist, PSA — PINK AND BLUE MOVIE (@pinkandbluedoc) June 11, 2015

#Hcchat Q1 It’s not a walk in the park. I haven’t had cancer but it’s a lot of effort and energy. it’‘s what I have to do for my health

— PINK AND BLUE MOVIE (@pinkandbluedoc) June 11, 2015

#hcchat q1. - biggest challenge being man with BRCA and cancer is that only approved targeted therapy is for ovarian and breast cancer — Ken Deutsch (@KDeutsch) June 11, 2015

How can we support men and open up this conversation?

As someone who used to be a guy, my advice is simple - learn, listen, get checked or at least find a partner who will do it for you #Hcchat

— AliveAndKickn (@AliveAndKicknDD) June 11, 2015

#Hcchat Q2, 3 You can make your own cancer risk managment decisions but at least get the information. It’s out there. It's in the film — PINK AND BLUE MOVIE (@pinkandbluedoc) June 11, 2015

@KDeutsch that is very scary that approved therapy is not available for male #BRCA#hcchat

— Linda Zercoe (@lindazercoe) June 11, 2015

@Hc_chat Don’t wait until fifty for screening, especially if you have a #FamlyHistoryOfCancer. #Hcchat — Bones (@ChimperScott) June 11, 2015

#Hcchat#MensHealth#malebreastcancer#prostatecancer#coloncancer#BRCA#melanoma#lynchsyndrome#MensHealthMonthhttps://t.co/DJMRqc8eqX

— Lisa M Guzzardi, RN (@LguzzardiM) June 11, 2015

#hcchat Our hope is to capture the attention of the #youth in order for them to seek out #GeneticCounseling & #GeneticTesting if necessary.

— The Buttfolio (@TheButtfolio) June 11, 2015

Read the full transcript here or search #Hcchat on Twitter. Have a question or comment you didn't get to contribute? Please post in the comments below.

Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our amazing co-hosts @Shewithlynch and @BRCAresponder and guests Alan BlassbergScott Anderson and Ben of The Buttfolio.

Discussion: Sex After Oophorectomy, Hysterectomy

colon-cancer-lynch-syndrome-tweet-chat
colon-cancer-lynch-syndrome-tweet-chat

A major issue for female cancer previvors and survivors that have undergone an oophorectomy or hysterectomy is sex following surgery. And as you may expect, it’s an issue that patients and clinicians don’t always know how to talk about or address. This can leave some women to feel that there is no hope of ever regaining a satisfying sex life.

However that is not the case. Last week we held a Tweet Chat with our amazing co-hosts Georgia HurstAmy Byer Shainman and special guest Sharon Bober, PhD to discuss the important nitty gritty details of sex after surgery, including the emotional toll of decreased libido and how to make sex pleasurable again. Dr. Bober is a Psychologist, Researcher and Director the of Sexual Health Program at the Dana Farber Cancer Institute and works extensively with cancer previvors and survivors.

Top tips:

  • Go slowly
  • Communicate with your partner
  • Seek out a pelvic floor physical therapist

Here are some of the questions we asked and the personal experiences shared by participants:

As usual, we had a diverse crowd joining us:

Dave Dubin, founder aliveandKickn Lynch Syndrome foundation, above average soccer player and coach #Hcchat

— AliveAndKickn (@AliveAndKicknDD) April 30, 2015

#Hcchat I am an oncology advanced practice nurse, specialize in hereditary cancer syndromes

— Lisa Aiello (@crazyknit68) April 30, 2015

#Hcchat I am a host of a genetics podcast that educates the public on anything related to genetics — DNA Today (@DNApodcast) April 30, 2015

Hello all. Nancy here. Blogger, brca2+, advocate, bc cancer survivor - 5 yrs as of today actually, have had a lot of surgeries. #hcchat

— Nancy's Point (@NancysPoint) April 30, 2015

Greetings all! I am a multivivor (#cancer 5times) w LiFraumeni! 22 yrs and hanging strong #hcchat — Linda Zercoe (@lindazercoe) April 30, 2015

How has surgery affected your sex life?

Back to regular Twitter. A2: Very difficult adj to no hormones and lack of hormones! No real support from med community! DEPRESSION #hcchat

— Linda Zercoe (@lindazercoe) April 30, 2015

A2 - long time adjusting to changes from chemo and surgery. Too busy trying to stay alive to complain about that aspect of life. #hcchat — Women of Teal (@womenofteal) April 30, 2015

Give us three words to describe your sex life post surgery:

@BRCAresponder#Hcchat Need to hit reset button; focus on pleasure, sensual stimulation, less focus on penetration alone helps!

— Sharon L Bober (@DrSharonBober) April 30, 2015

@DrSharonBober@Hc_chat#Hcchat thankfully my sex life is good post hysterectomy. My 3 words Oh God yes! Lol — Karen Lazarovitz (@karenBRCAMTL) April 30, 2015

What has been helpful, emotionally or physically?

#Hcchat T5 Honestly, having a partner who isn't scared of the medical things and will listen, respond, etc.

— Mutant Chic (@MutantChic) April 30, 2015

T5 - @Hc_chat My husband's patience! #HCChat — Lee (@NJIvorygirl) April 30, 2015

A5: As w everything re: sex Partner, Patience, Communication and Imagination! Frustration doesn't help #hcchat

— Linda Zercoe (@lindazercoe) April 30, 2015

What are some methods for improving sex drive?

@NJIvorygirl@Hc_chat#Hcchat Libido is recipe made up of many ingredients...fantasy, erotica, massage, power of mind.. — Sharon L Bober (@DrSharonBober) April 30, 2015

Other words of wisdom and additional resources:

#cancersexnet#Hcchat Female ca survivors w vaginal atrophy who are moisturizing 3-5x week show significant benefit.

— Sharon L Bober (@DrSharonBober) May 1, 2015

@LguzzardiM#Hcchat Pelvic Floor Physical Therapy Rocks and one of the secrets no one knows about!! — Sharon L Bober (@DrSharonBober) April 30, 2015

@crazyknit68#Hcchat BC survivors can definitely consider vaginal estrogen...decision best made with treatment team.

— Sharon L Bober (@DrSharonBober) April 30, 2015

@NJIvorygirl#Hcchat Best to use a lubricant that is also moisturizing like Liquid Silk! KY is not my first choice! — Sharon L Bober (@DrSharonBober) April 30, 2015

@NJIvorygirl#hcchat if you are in pain, please seek guidance. A good Pelvic Floor Physical Therapist should be able to assess... — Sharon L Bober (@DrSharonBober) April 30, 2015

@DrSharonBober@NickiDurlester but vaginal health isn't the same as sexual health. And don't forget the vulva. #sexandcancer

— Don S Dizon (@drdonsdizon) April 30, 2015

@NJIvorygirl@Hc_chat#Hcchat guilt is not sexy...what about a joint expedition to find what feels nice, pleasurable, relaxing....no pressure

— Sharon L Bober (@DrSharonBober) April 30, 2015

#Sexuality & romantic relationships in young adult #cancer survivors: satisfaction & supportive care needs. #hcchathttp://t.co/7jUFQnkuDk — Lisa M Guzzardi, RN (@LguzzardiM) April 30, 2015

Read the full transcript here or search #Hcchat on Twitter. Have a question you didn’t get to ask? Please post in the comments below.

Don’t forget to follow us on Twitter and Facebook to receive notifications about upcoming discussions and other news. Also please follow our amazing co-hosts @Shewithlynch and @BRCAresponder and guest @DrSharonBober.

Discussion: Your Need-to-know Guide About Colon Cancer

colon-cancer-lynch-syndrome-tweet-chat
colon-cancer-lynch-syndrome-tweet-chat

In honor of Colorectal Cancer Awareness month, we've spent March sharing resources, information, and personal stories on prevention and living through cancer. We'd like to end the month with our attention on Lynch Syndrome – a hereditary cancer syndrome that is still largely misunderstood among patients and in the medical community.

Last weekend we held a Tweet Chat with our amazing co-hosts @Shewithlynch and @BRCAresponder to discuss the connections between colon cancer and Lynch Syndrome. Here are some of the personal experiences we heard about:

The Colonoscopy

@ShewithLynch Advice: Early detect saves lives, contemplating colonoscopy doesn't. Simple proced=prep is worse than procedure itself #lschat

— Lisa M Guzzardi, RN (@LguzzardiM) March 22, 2015

#lschat No one ever told me that they regretted getting a colonoscopy. Don't Delay! Especially if you have symptoms. — Dr. Allyson Ocean (@drallysonocean) March 22, 2015

Sister & I diagnosed w/Lynch 2 years ago. She had 1st colonoscopy last week & has cancer. I'm now scheduling mine too... #lschat

— Stephanie Quinn (@QuinnWordWoman) March 22, 2015

Genetic Counseling

Patients with new diagnosis of colorectal cancer should be offered genetic testing for Lynch syndrome #LSchathttp://t.co/1NHQAa3Wms — Dr. Muin Khoury (@DrKhouryCDC) March 22, 2015

@ShewithLynch Please keep in mind that you can see a #geneticcounselor even if you are on the fence --- you won't have to test. #lschat

— MyGeneCounsel (@MyGeneCounsel) March 22, 2015

Lschat Q5 I have genetic testing...and it was a tough decision to make. But I am glad that I know. #lschat — Ann McKinley (@raggedy729) March 22, 2015

You can find a #geneticcounselor from @geneticcouns: http://t.co/h9kWL2YyIP#LSChat

— CenterJewishGenetics (@jewishgenetics) March 22, 2015

An Argument for #GeneticTesting via @cure_magazine#Lynchsyndrome#Lschat#HereditaryCancerSyndromes#DNA#Geneticshttp://t.co/wx7r1Bd1cM — Georgia Hurst (@ShewithLynch) March 22, 2015

In the Family

#lschat I have learned just how important taking a good #familyhistory is-- if you don't ask, you will miss life-saving info!

— Dr. Allyson Ocean (@drallysonocean) March 22, 2015

Q5 worked with genetic counsellor and our kids to get all tested. 1/3 is positive and he and I get yearly scopes together #dadsonfun#lschat

— Prompters to Life (@prompters) March 22, 2015

#Lschat I'm Jessie. I'm 28 and I have LS. My father died at the age of 32 from colon cancer. #coloncancer#GetScreened — Jessica DeYoung (@justjessie2u) March 22, 2015

Survivorship

@Thandy_13 I never received counselling, though I did think about asking for it & it probably would have helped me after diagnosis #Lschat

— writer sam (@teh_samby) March 22, 2015

@Thandy_13 I received counseling when I tested positive for #BRCA it was very helpful. #lschat — Amy Byer Shainman (@BRCAresponder) March 22, 2015

Q7 no psych for me but I had crc before I knew lynch. we supported my son when he got diagnosis but not professional psych. #lschat

— Prompters to Life (@prompters) March 22, 2015

Q4 sub-total colectomy after crc 2. no colostomy. life has not changed much, 2xIronman triathlon in 7 years since #lschat — Prompters to Life (@prompters) March 22, 2015

Dave Dubin, 3x lynch survivor above average soccer player #lschat

— AliveAndKickn (@AliveAndKicknDD) March 22, 2015

Research

@PennMedicine researchers pinpoint new driver of #coloncancer#lschat#lynchsyndrome#crcsmhttp://t.co/3sGmJkvlWC — Lisa M Guzzardi, RN (@LguzzardiM) March 22, 2015

Psychosocial Impact of #LynchSyndrome on Affected Individuals and Families. #lschat@ShewithLynch Authors http://t.co/BJ1JzvGVrE

— Lisa M Guzzardi, RN (@LguzzardiM) March 22, 2015

Improving uptake of predictive testing & colorectal screen in #Lynchsyndrome: a regional primary care survey #lschathttp://t.co/InbpnOaO8X — Lisa M Guzzardi, RN (@LguzzardiM) March 22, 2015

Read the full transcript here or search #LSChat 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 

Angelina Jolie Pitt's Op-ed This Week Sparks Wider Discussion on Hereditary Cancer

colon-cancer-lynch-syndrome-tweet-chat
colon-cancer-lynch-syndrome-tweet-chat

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.