Like Angelina Jolie, Jupiter mom had surgeries to avoid deadly cancer https://t.co/1TfSbWGflR— The Palm Beach Post (@pbpost) October 17, 2017
Tuesday, October 17, 2017
Wednesday, September 27, 2017
Tuesday, September 12, 2017
|Released today! 9/12/17|
Available on Amazon
Caitlin Brodnick is a comedian @ucbtny, author of the newly released Dangerous Boobies: Breaking Up with My Time-Bomb Breasts, & Creator of #ScrewUCancer. You may also recognize her as the "deodorant girl" in a new national commercial.
Q1) Hi Caitlin,
Congratulations on your book release Dangerous Boobies! Please tell me what your book is about, why you wrote it, and how long it took you to write?
caitlin brodnick @caitybrodnick
caitlin brodnick @caitybrodnick
A1) It took my about 3 years and I wrote it because I felt at the time of my mastectomy I was hungry for a book of this type. I didn't want to read medical reviews and abstracts I just wanted a something conversational and fun from a young woman's point of view.
Q2) In one of your recent interviews you mentioned your book being used as a tool. Can you expand on this? I am constantly looking for great resources on BRCA/hereditary cancer and I'd love to hear how you feel your book can help others.
A2) My book helps break down what BRCA is and talks about options for someone who is negative or positive for the BRCA gene mutation. I go over my options when I was going though my mastectomy and reconstruction. I also talk about my top fears and how I healed and what I needed from my caregivers. There are brilliant doctors and scientists throughout the book- because I am in no way a doctor but I know some incredible women who were kind enough to give their medical knowledge. I felt like if I was going to be open and honest with a comedic voice- we also needed some sound medical advice!
Q3) You have a ton going on! You were recently featured in a national deodorant commercial, you are a stand up comic, you have your book release, AND you are going to be a mom! So, what does the next year look like for you? Also, can we expect a sequel? "Perilous Ovaries"?
A3) Haha I don't know yet- I just want to find the best formula for my new baby- now I'm on the hunt to feed him donor milk or a fancy Swedish formula! This next year I'm really excited to see what will happen. I honestly have no idea! I want for this book to be that tool for a woman she can grab when she's nervous or curious and can flip to a chapter about sex after surgery and be comforted by my crazy experiences.
Q4) Anything else you want to say or want people to know? Congratulations again Caitlin. It's so important our BRCA stories continue to be told. So, my personal thank you to you for sharing yours in such a public way!
A4) I want women to know they aren't alone- even if they want to be alone- they aren't far from someone who has had a similar experience. Cancer is scary but informing yourself doesn't have to be, and we can be there to support each other. That's all I wanted from this book- to share my story and create more of a conversation about a topic that is still very new!
Dangerous Boobies, by Caitlin Brodnick, released September 12, 2017
Friday, August 18, 2017
|Amy Byer Shainman |
The BRCA Responder
Exhausted from my day and not expecting much, I hit "play" on my remote hoping to quickly get through the episode so I could get to my much needed zzz's. Then I heard it. Jolted wide awake and shocked to hear Alex correctly pronounce B-R-C-A correctly (by spelling out the letters) in the Scarlet Magazine office meeting. Alex did go on to say OR "BRCA (BRA-KKA)" which is how most of the world recognizes this gene being pronounced.— The Bold Type (@TheBoldTypeTV) August 16, 2017
Are you are wondering why both pronunciations? BRCA (BRA-KKA) is the name given to the gene by a certain genetic testing company. B-R-C-A spelled out is what the person who discovered the BRCA gene in 1994, Dr. Mary Claire King, calls the gene. It's how Dr. King intended BRCA to be pronounced. I call myself the spelled out "B-R-C-A Responder" and not the BRCA (BRA-KKA) Responder.
As a BRCA 1 gene mutation carrier and advocate for those with BRCA and other hereditary cancer syndromes, I absolutely applaud The Bold Type for having BRCA and hereditary cancer as part of the character Jane's storyline. I truly appreciate this focus and the awareness this BRCA storyline will provide. For the BRCA storyline, the writers consulted with @CDC_Cancer (CDC's Division of Cancer Prevention and Control: Promoting effective, science-based strategies to prevent and control cancer).
By consulting with CDC Cancer, the writers got a lot right. The audience sees Jane's see-saw of emotions which is due to both the great writing and yes, impressive acting by actress Katie Stevens who plays Jane. Another strong point which came across is when the doctor Jane is interviewing says, "Prevention is always better than treatment, always."Huge thanks to @CDC_Cancer for consulting on this story with us. Follow them for more information on breast cancer and testing. #TheBoldType— Sarah Watson (@SarahWatson42) August 9, 2017
— Georgia Lynn (@Georgiafraz) August 17, 2017
While I am thankful for what the Bold Type writers accomplished, what I wish they would have included in this episode was a consult with the most qualified expert to discuss individual cancer risk and hereditary cancer; a certified genetic counselor.
Find a certified genetic counselor near you by going to:
Jane is about to go to interview a doctor about BRCA for her magazine article for Scarlet. The back story is that Jane's mother died from breast cancer.
Are you sure that going to see the "BRCA doctor"is a good idea? Sutton asks.
It's not clear to me as the viewer hearing "BRCA doctor" what type of doctor Jane is actually interviewing. Was it a breast surgeon? An oncologist? Another type of doctor?
Kat says to Jane, "We were just thinking while you were there maybe you could um. ask the doctor about getting 'the test' ...our insurance covers it now."
We see Jane in the doctor's office getting a blood test and in a subsequent scene finding out from the doctor that she is positive for a mutation in the BRCA 1 gene.
#TheBoldType spent an entire episode on BRCA & early detection! On behalf of everyone who has lost a loved one to breast cancer, thank you pic.twitter.com/uhrv4blbq1— Jarett Wieselman (@JarettSays) August 10, 2017
Certified genetic counseling was what I was missing from this episode. It's important for women AND men to understand the difference between genetic counseling and genetic testing as they often get confused. Genetic counseling does not mean one has to undergo genetic testing. A certified genetic counselor can explain to an individual what genetic testing for hereditary cancer actually is and what both positive or negative results can and cannot tell you. Genetic counseling does not mean genetic testing has to happen.
In addition, there are MANY gene mutations beyond BRCA. Researchers have associated mutations in specific genes with more than 50 hereditary cancer syndromes. A certified genetic counselor is the most qualified expert to assess an individual's cancer risk, determine which gene mutation panel or genetic test is appropriate (if any), and interpret genetic testing results. More than this, one's family history alone can increase cancer risk even without a known gene mutation. #TheBoldType had an opportunity to incorporate this vital information into the episode with only a couple well written lines.
As a patient advocate "in the trenches", I am constantly picking up messy pieces of those who have undergone genetic testing without certified genetic counseling. My hope is that the #TheBoldType includes this crucial awareness piece by having a few scenes where Jane meets with a certified genetic counselor. Perhaps that is coming up in a future episode. I'm hoping Jane (as well as the viewing audience) is clearly informed with a researched and well written script as to her recommended health screenings and cancer risk reduction options. The doctor does say at the end of "The Breast Issue" episode, "There are several options for managing your care and we're gong to find the one that works best for you." I will definitely be watching future episodes for how all of this is handled.
Melora Hardin is perfectly cast as Jacqueline, the boss and hands down acting anchor of the show. Be sure to look for Hardin starring in Paul Osborne's film Cruel Hearts, currently in post production. In a small world twist, (and yes, absolutely shameless plug) you will also be able to hear my husband Jon as a reporter voiceover in the film!
Discussing BRCA, orgasms, addressing #FreeTheNipple, including #LGBTQ storyline, #TheBoldType is as its title says "Bold" covering the deeper topics. Yet, there are also the sexy, steamy shower sex scenes, great office dynamics and mis-haps, girlfriend chats with nachos (you'll just have to watch), and ultimately laugh out loud one liners like that in last week's end of episode bathtub scene. "I had sex in here like three days ago." The three young actresses that play Jane, Kat, and Sutton ultimately won me over...they are all very likeable and yes, all have serious acting chops.
At the end of the day, my reason for watching television is to escape. It helps me unwind from a long day. That last bathtub scene transported back to Los Angeles when I was that twenty something young professional and my life was all about dating, work, cocktails, and my girlfriends. The BRCA storyline is what got me to initially watch #TheBoldType but in full transparency--it's the authentic relationships, impressive acting, writing, and laughs that will keep me tuning in to escape on Tuesday nights.
The Bold Type airs Tuesdays at 9/8c on Freeform.
Also available to watch on hulu - amazon - itunes
Also available to watch on hulu - amazon - itunes
Friday, August 4, 2017
Tuesday, July 25, 2017
|Ellen Matloff, MS, CGC|
I’ve been a certified genetic counselor for over 20 years, working in pediatrics, general genetics, cancer genetics, and now as the CEO of my own company, My Gene Counsel. I have counseled thousands of patients and their families over these two decades, have run patient support groups, and have created and produced a podcast of patient stories.
At this point in my career I’m considered a seasoned genetic counselor.
At this point, shouldn’t I know everything there is to know about patients? No.
I continue to be reminded that patient care is complex and evolving. There is always more to learn. I’ve never been reminded of this more than in the patient advocacy community. There are different types of patient advocates. Some are health care professionals who advocate on the behalf of patients. The patient advocates I speak of in this blog are instead patients, who advocate on behalf of themselves, their families, and the greater community of patients – particularly of patients who have the same condition or predisposition.
Over the past 3 years I have become involved in several genetics advocacy communities, especially those associated with hereditary cancer. My immersion into these communities has taught me, and reminded me, of many valuable lessons.
- We, as cancer genetic counselors, counsel patients on their risks, sometimes help them choose a surveillance plan and/or prophylactic surgery, and often see them through that procedure. We hope that our patients have avoided a cancer diagnosis, and that everyone lives happily ever after. This is not always the case.
We know this, of course, as health care providers, but being immersed in the advocacy community you really see the long-term impact of these risk-reduction decisions. Patients live with these major medical decisions for the rest of their lives. Many of them battle negative effects that can be associated with surgically induced menopause, plastic surgery, and reconstructive surgery. They carry scars, physical and emotional, of the testing process and the decisions that followed. Many of them are grateful to have had the chance to make an informed decision and to avoid a first, or subsequent, cancer diagnosis. But some of them feel that the resulting outcomes were not worth reducing the risk of cancer development – even if they feel guilty for admitting that. As health care providers we focus on the cancer risk reduction – and that is clearly important – but there is more to be measured here, including the impact on quality of life, emotional, physical, and psychological well-being. And quite likely there will be a trade-off for patients who choose these medical interventions – both short- and long-term. Patient advocates are there to remind us of this.
- Genetics and medical care is personal for these advocates. Be careful what you say and how you say it.
Two of my advocate friends recently attended a medical conference and a well-known speaker scoffed that ‘prophylactic mastectomy is an easy surgery.’ Perhaps he meant that procedurally a mastectomy is an easier surgery than a colectomy or an oophorectomy, in that breast tissue is not near major organs that can be injured. These two advocates didn’t hear it that way. One of them has personally experienced a prophylactic mastectomy, and they both have worked with countless patients who’ve had these surgeries, some of whom have experienced difficult physical and/or emotional recoveries. This comment rubbed them as calloused, insensitive, and hard-hearted – particularly coming from a male physician who has no idea, on a personal level, of what these patients have experienced. Whenever you give a lecture remember: in this age of technology and social media, it is most likely that a patient is hearing, or will hear your words. In fact, he or she may be live tweeting them out.
- Patients want to be treated like intelligent, respected partners. No one is more invested in forwarding the field than the advocates.
Gone are the days when it is acceptable to leave your patient sitting in the waiting room for hours, and then call them in and tell them how it’s going to be. Genetic counselors as a whole have never bought into this paternalistic style of medicine, but now even we have to up our games. Many of these patients are smart, they’re invested, and there is a pretty good chance that they’ve read the latest journal article before you have – welcome to the world of patient advocacy via Facebook, Twitter, and Instagram. Of course, most patients don’t have medical backgrounds and they will likely need help deciphering the information, but they are on top of their game and want to be considered partners in the decision-making process. We should treat them as such.
- Speaking of forwarding the field --- advocates want their data freed.
Patient advocates are smarter, savvier, and better informed than ever. They want their genetic data shared to benefit research and the care of other patients, and they won’t settle for anything less. Companies who have previously taken advantage of patient naivete beware: advocates are partnering and banning together to free their data. Don’t stand in their way.
Medicine is changing rapidly and patients are becoming partners in, and consumers of, health care. Are you creating a clinical trial? Developing a patient intervention or materials? Or starting a company in the health care sector? My best advice to you is to bring on patient advocates as your partners from the start. Their perspective is vital.
Ellen Matloff, MS, CGC is the President and CEO of My Gene Counsel. Ellen is the founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine.
Ellen has authored more than 50 scientific publications in the field, is an established educator, lecturer and media spokesperson and has received national awards for her ongoing patient advocacy efforts. She is an outspoken patient advocate in many areas, most notably as a plantiff in the 2013 BRCA gene patent case that went before the Supreme Court in 2013. This decision has led to drastically lower prices of genetic testing, making it possible for more patients to afford this technology.
As genetic testing became more common and also more complex, she served as the senior author on several publications documenting national errors in the misinterpretation of genetic test results. From these experiences, Ellen created My Gene Counsel and its associated digital tools that can be used in parallel with genetic testing to help ensure that results are used accurately and effectively.