UCSF Radiology Hosts #UCSFRadChat To Discuss BRCA Genes, Hereditary Cancer and More!
Author: Laurel Skurko, Marketing Director, UCSF Radiology and Biomedical Imaging
In April, UCSF Radiology hosted our first Live Twitter chat on diagnosing and treating hereditary cancers alongside the UCSF Helen Diller Family Comprehensive Cancer Center (HDFCC) and its Center for BRCA Research. Overall, participation was strong with 57 total contributors tweeting before, during and after the live Twitter chat. Thanks to the strength of our collective outreach, the potential reach (total number of times somebody could have seen the hashtag in their feed) for the first ever #UCSFRadChat was almost half a million (484,393)! The diversity of views and the insights shared were meaningful.
The idea for the Twitter chat was brought about to continue the momentum created by a real-time event in the fall of 2017 titled ‘Considering BRCA Genes: Knowledge Improves Outcomes.’ This event helped disseminate knowledge to fill important gaps in community understanding and improve patient outcomes for those with BRCA1 and BRCA2 gene mutations. For this reason, Pamela Munster, MD, co-leader of the Center for BRCA Research and the other panelists encouraged all stakeholders to do what they could to spread the word. Thanks to their efforts and active outreach, we received over 1 million visits to our online assets, including blogs, videos, radio ads and social posts. Momentum has grown and led to this successful Twitter Chat event hosted last month.
For the Twitter Chat, UCSF Radiology, HDFCC and the Center for BRCA Research (@UCSF_BRCA) gathered a new panel including Julie Mak, MS, CGC, a genetic counselor and supervisor at the UCSF Center for BRCA Research - Hereditary Cancer Clinic; Kelly Williams, NP, a nurse practitioner at the UCSF Center for BRCA Research - Hereditary Cancer Clinic; Laura Holmes Haddad, patient advocate and breast cancer survivor and Heather Greenwood, MD, an assistant professor of Clinical Radiology in the Breast Imaging section at UCSF Radiology. Though several of the panelists were new to Twitter, thanks to their passion for learning and educating, they came up to speed instantly and created a real-time event that was highly impactful.
The team covered important facts about hereditary cancers and relayed their personal and professional approaches to addressing these diagnoses. Chat participants brought up many important points that illustrate common questions and concerns both patients and their supporters have. Head over to the Twitter chat hashtag (#UCSFRadChat) to see the full discussion. Here are just a few highlights:
- When a participant discussed their concern that a family member might decline to be tested, Julie Mak, tweeting from Kintalk at UCSF (@KintalkUCSF), an educational and family communication site for individuals and their families with hereditary cancer conditions, pointed out that testing is a personal decision, and underscored that talking with a genetic counselor is for the purpose of education and exploring options. She went on to explain that this important conversation does not hold the expectation that a patient will necessarily decide to be tested, but they can discuss the resources available to them.
Have a 35 year old son who still refuses testing. Smart and understanding of BRCA but refuses to test. Suggestions? Younger Brother tested and Negative. Can’t convince... #UCSFRadChat
— -HIS BreastCancerHarvey (@UVharvey) April 26, 2019Another idea - is there a friend or other family member that your son might relate to about this? Still recommend #geneticcounseling as a way to just have a neutral discussion, even for people who have a lot of knowledge, it can help to think about it in a fresh way #UCSFRadchat
— Kintalk.org (@KintalkUCSF) April 26, 2019Glad you are looking out for your son!I want everyone to know that they can come talk to a #geneticcounselor without committing to testing. Sometimes, it helps to be able to hear the information and talk about it in a neutral space. #UCSFRadchat
— Kintalk.org (@KintalkUCSF) April 26, 2019 - Laura Haddad, (@holmeshaddad), Twitter chat panelist, BRCA2 gene carrier, inflammatory breast cancer survivor, patient advocate, speaker and author, discussed under what circumstances she would discuss with her children their genetics.
I completely agree; each patient/family/parent has to make their own decision. I would not attempt to discuss it with my kids w.out talking to my #BRCA team, though. Too many tough choices to make. #thisiscancer #UCSFRadChat
- Laura Holmes Haddad (@HolmesHaddad) April 26, 2019
- Dr. Greenwood, (@drheatherilana) whose career as a breast imager is based on the loss of her mother to breast cancer when she was a child, provided her personal insight as an answer to one of the questions: What should BRCA parents tell their children about their risk? “I personally was glad to know I was at increased risk for breast cancer, so that I could get tested, and make decisions based off the results. Not everyone wants to know and that is ok. For me knowledge power and that is why I am glad I had this discussion,” she said.
A8. I personally was glad to know I was at increased risk for breast cancer, so that I could get tested, and make decisions based off the results. Not everyone wants to know and that is ok. For me #knowledgeispower and that is why I am glad I had this discussion #UCSFRadChat
— Heather Greenwood MD (@drheatherilana) April 26, 2019
- A chat participant shared her story. “I've lost my aunt to breast cancer and my mom got sick 2 years ago. I am also BRCA2 carrier and my daughter is 9 years old. I would love to spare her the news, but she is aware of the situation and has already asked so many questions it was impossible to hide it.” Julie Mak and Amy Byer Shainman (@BRCAResponder), advocate speaker and author, provided her with positive support and encouragement and online resources to check out such as FORCE (@FacingOurRisk), a group whose mission is to improve the lives of individuals and families affected by hereditary breast, ovarian, and related cancers (HBOC).
Hi Tea, that's a lot for a family to go through. Even though she is aware, there are ways to talk about it that keep it in perspective for her at this age. A #geneticcounselor is a good resource, and @FacingOurRisk has handbook on talking to children #UCSFradchat
— Kintalk.org (@KintalkUCSF) April 26, 2019
- Other participants asked about screening programs and protocol for BRCA+ men. According to the Center for BRCA Research, there are specialized screening recommendations for men, individualized based on gene, family history and personal history.
So important to remember that #BRCA affects men as well! There are specialized screening recommendations for men. These are individualized based on gene, family history, and personal history. We work with many men in our clinic. Call 415-353-9797 #UCSFRadChat
— Kintalk.org (@KintalkUCSF) April 26, 2019This is a great question! We know breast MRI is the most sensitive exam for breast cancer. The problem in males is we don't have the data like we do for women. This would be a great area of future research
— Heather Greenwood MD (@drheatherilana) April 26, 2019
A special shout-out to community colleagues, both professionals and laypeople, who, during the event itself amplified the conversation. These include UCSF HDFCC (@UCSFCancer); Dianne Shumay, PhD, director of Psycho-Oncology at UCSF HDFCC (@DianneSF); Mitchell Rosen, MD reproductive endocrinology and fertility expert at the UCSF Center for Reproductive Health (@fertilefutureMD); BRCA Umbrella (@BRCAUmbrella) and Amy Byer Shainman (@BRCAresponder), advocate, speaker and author. Thank you to all participants for sharing your personal and professional commitment to this topic. Also, thank you to Steve Westly (@SteveWestly) for your support in promoting this event and encouraging participation within your strong Twitter network.
Knowledge improves outcomes. Collaborative efforts help spread the word, expand knowledge and promote awareness on crucial health topics and also highlight the latest advancements in cancer research and care. UCSF continues to be a resource for individuals who carry BRCA1 and BRCA2 mutations – those most commonly involved in Hereditary Breast and Ovarian Cancer (HBOC). Visit the UCSF BRCA Center website to access downloadable PDFs of frequently asked questions (FAQs):
To stay up-to-date on future Twitter Chat dates and times, check back on our blog, like us on Facebook and also follow us on Twitter (@UCSFimaging).