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Tag Archives: genetic testing

Hereditary Breast and Ovarian Cancer in the Era of Online Health Information: The Case of Angelina Jolie

 

Marleah Dean Kruzelby Dr. Marleah Dean Kruzel, Assistant Professor in Health Communication at the University of South Florida

 

When your mother is diagnosed with breast cancer, it changes your life. When two aunts and a grandmother are diagnosed, and you learn your great-grandma died of breast cancer at 35 years old, you start to wonder…Perhaps cancer isn’t just a disease. Perhaps, in your family, it is a way of life.

 

Because of these family cancer diagnoses, at 24-years old, I underwent genetic testing for the BRCA2 genetic mutation. Unfortunately, like my mother, I tested positive. My healthcare providers estimate that I have an 84% chance of developing breast cancer and a 27% chance of developing ovarian cancer at some point in my life.

 

Testing positive inspired one of my current avenues of research—hereditary breast and ovarian cancer (HBOC). My research investigates individuals who are highly predisposed to HBOC due to the genetic mutation BRCA1/2 but have not been diagnosed with cancer. Often referred to as previvors, such individuals like myself must make informed health decisions in order to protect our health and secure our future. Specifically, I am interested in understanding previvors’ and  their families’ health experiences in order to improve their health, decision-making, well-being, and overall quality of life.

 

Perhaps one of the most well-known previvors is Angelina Jolie. In 2013, Jolie wrote a The New York Times op-ed, disclosing her BRCA1 genetic status and her decision to undergo a preventative bilateral mastectomy in order to prevent breast cancer. Undergoing this surgical procedure reduced her breast cancer risk from 87 percent to 5 percent. Two years later, Jolie wrote another op-ed, revealing her decision to undergo a preventive bilateral salpingo-oopherectomy — the surgical removal of one’s fallopian tubes and ovaries in order to prevent the risk of ovarian cancer.

 

While previous celebrity health announcements such as Magic Johnson’s disclosure about his HIV status or Michael J. Fox’s announcement about his diagnosis with Parkinson’s disease impacted the public, Jolie’s disclosure occurred during the era of online health information seeking.

 

The Internet has changed health and healthcare. Patients are not just using the Internet to obtain information but also to make health decisions. Some perceive the health information they find online to be very informative. In one study published by the Journal of General Internal Medicine, 60% of participants said the Internet information was the “same as” or “better than” the healthcare providers’ information.

 

Angelina Jolie’s celebrity health announcement is a great example of this change. For example, on the day of her 2013 op-ed, visits to the National Society of Genetic Counselors’ ‘Find a Genetic Counselor’ tool received an 86% jump. The National Cancer Institute’s webpages about BRCA, preventative mastectomies, and breast reconstruction also received an increase in visits, clearly demonstrating an increased awareness about hereditary cancer and genetic risk.

Given the interest in Jolie’s op-ed and because the public often listens (and follows) celebrity behaviors, it is important to understand what information individuals are exposed to when searching online for health information regarding Jolie’s story. Thus, in a recent study published by Health Communication, I analyzed websites covering Jolie’s 2013 op-ed. My analysis of 92 unique websites — across Google, Yahoo, and MSN search engines — revealed four main themes: 1) information about genetics, 2) information about a preventative bilateral mastectomy, 3) information about health care, and 4) information about Jolie’s gender identity.

 

Information about Genetics

First, when searching for information about Jolie’s op-ed, online health information seekers are exposed to information about genetics. Almost every website mentioned the BRCA genetic mutation. A few described the genetic mutation in depth, explaining who is susceptible and why. Yet perhaps most interesting was that some websites emphasized that individuals should not be misled by this story and carefully assess their individual risk factors before making decisions.

 

Information about a Preventative Bilateral Mastectomy (PBM)

Second, the websites discussed information about Jolie’s PBM — describing the surgical procedure and explaining her reconstruction. The websites also discussed Jolie’s reasons for undergoing a PBM (e.g., the importance of being there for her family and worrying about a possible future diagnosis of cancer). Moreover, some of the websites used Jolie’s story as a way to discuss other health options for individuals who test positive for a BRCA genetic mutation, which include increased surveillance and chemoprevention.

 

Information about Health Care

Third, when using the Internet to seek health information about Jolie, individuals are exposed to information about healthcare services, costs, and insurance coverage. For one, many websites noted Jolie’s privilege to the best healthcare providers and services — luxuries which are not available to everyone. Building on this idea of “red carpet health care,” several websites also discussed issues regarding the high costs of genetic testing and access to insurance.

 

Information about Jolie’s Gender Identity

Finally, a majority of the websites articulated Jolie’s gender identity as a sexual icon, a partner in a relationship, a mother, and a humanitarian. Many websites commented on how shocking Jolie’s PBM decision was given her beauty and sexual appeal. Additionally, some websites mentioned Jolie’s romantic relationship to Brad Pitt and her role as a mother as driving factors for her health decision. Lastly, the websites also portrayed Jolie as a humanitarian — an individual committed to promoting human welfare and well-being.

 

So what can we learn from Angelina Jolie’s celebrity health announcement?

  1. Celebrity health announcements such as Jolie’s story impact the public’s perceptions and even behaviors. As such, health messages from celebrities should be clear and specific, seeking to help the public understand an issue. It is our responsibility as patients to verify online health information with additional sources such as our healthcare providers.
  2. News outlets including online outlets often focus on the celebrity’s cancer story. Thus, as patients we need to be critical of what we read, examining if the source is reliable or not.
  3. Online health information can be helpful in making personal health decisions. As patients we should gather any and all information that we think may be helpful; yet at the same time, we need to take the information we find as one perspective. Because ultimately, we need to make the best decision for us.

 

Overall, my journey has been an emotional one but a good one. There are days I worry about whether I will be diagnosed with HBOC. Yet, knowing about my lifetime risk is empowering, and through my research and volunteer work, I get to interact with women and men who encourage and inspire me daily.

 

Note: Portions of this piece were originally published on Dr. Marleah Dean Kruzel’s blog, The Patient and the Professor.”

 

 


 

 

Article Source:

 

Dean, M. (2016). Celebrity health announcements and online health-information seeking: An analysis of Angelina Jolie’s preventative health decision. Health Communication, 31, 752-761. doi: 10.1080/10410236.2014.995866

 


 

Dr. Marleah Dean Kruzel is an Assistant Professor in Health Communication at the University of South Florida, Tampa, FL. She studies patient-provider health communication and is currently examining genetics and risk communication in the context of hereditary breast and ovarian cancer. A BRCA2 previvor herself, Marleah is committed to translating her research into practice, which is why she volunteers at FORCE and maintains a blog called “The Patient and the Professor.” For more information, visit www.cancercommunicationresearch.com.

 


 

Turning Guilt into Silver Linings

KatrinaSmithby Katrina Smith, Patient Liaison

 

I’ve never been a gambler, but 50/50 odds seem pretty good, until they’re not. My Mom was diagnosed with breast cancer at the age of 50. Based on her age, the cancer type being triple negative, and a strong family history of breast cancer, her oncologist suggested she be tested for BRCA mutations. It turns out she is BRCA1+, meaning I had a 50/50 chance of also having the same mutation. I received my BRCA1+ results on May 14, 2014. The thoughts I had tried to push out of my mind came rushing to the forefront. Did I already have cancer that I was unaware of? Did I pass this mutation on to my own children? How would I tell my mom, who was in the middle of chemo treatments?

 

 

My statistics as a BRCA1+ woman were 87% chance of breast cancer in my lifetime and 40-60% chance of ovarian cancer. I already knew my options:  surveillance or risk reducing surgeries. I never had any doubt that I would go the surgical route. It was my best chance at reducing my risk as much as possible and that was the only option I could live with. This would mean a total hysterectomy and removal of my ovaries and a prophylactic double mastectomy, with the option of reconstruction.

 

There are so many levels of guilt involved when you find out you are BRCA+, but have not yet been diagnosed with cancer. I wondered why I had gotten so lucky, but not my mom, my grandmother, other family members, or even other survivors in general who had not been fortunate enough to have this life saving information. I felt guilty for having surgeries that were not absolutely required, what if something did go wrong and how would it impact the lives of my husband and children? I was uncertain how it may affect intimacy with my husband. It is such an awkward space to be in sometimes, as well. Waiting for appointments amongst patients receiving treatment for cancer, being somewhere in between perfectly healthy and a cancer patient. The list could go on, but once I began looking at it as a blessing, instead of a curse, my focus changed dramatically. I realized I could use my own situation to educate, advocate for others, and raise awareness about what BRCA mutations really are. I wanted to be a source of hope and reassurance for other women facing the same decisions. The misinformation is astounding and there is also an unexpected backlash. Even though Angelina Jolie has done so much to raise awareness for the BRCA/HBOC community by discussing her own choices so candidly, it has also created a negative tone among many who are uneducated about the risks involved with BRCA mutations. One comment I saw that stuck with me, “Maybe she will have her brain cut out next, oops, too late.”

 

Deciding to have a double mastectomy when you don’t have cancer is a very difficult decision to make and even harder to explain. Many people are uninformed and think you are overreacting or taking “drastic” measures. The majority think it means disfigurement or unnecessary risk. I didn’t feel like I was allowed to express any fear or anxiety and I felt tremendous guilt because, after all, it was my choice and I certainly didn’t feel entitled to any sympathy.  So the majority of my decision making process was done alone.

 

I scheduled a consultation with the best plastic surgeon available in my area, though her only option for reconstruction was implants. Someone told me that when trying to decide on a plastic surgeon, look at their shoes and office. She said if they wear nice shoes and have a fancy office, its a sign they are a perfectionist and thus, a quality surgeon. This surgeon was not confident and she asked me twice if I was certain I wanted to “do this to myself.” Of course, I knew I needed to do this FOR myself, so I began gazing at her shoes and then at the walls, looking for hope. I left the appointment feeling defeated and frustrated. I began researching another option, DIEP Flap reconstruction. DIEP Flap is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy. I knew it would be a huge surgery with a lengthy recovery. I also knew it required highly experienced and qualified plastic/micro surgeons to get it right.

 

A friend referred me to Midwest Breast and Aesthetic Surgery. I was so inspired by her trust in them, that I knew I had to at least give it a shot. The confidence from these surgeons was palpable, as was their compassion. It was so reassuring and encouraging. They were informative and realistic, but fully certain I would be just fine. I knew I could trust them with my life. They are impressive on paper for sure, but the skill and care they provide are unparalleled. They replaced my fear with hope. When I left, I felt like I could actually breathe for the first time in months and I never once had to look at their shoes!

 

I believe in silver linings and I have discovered strength and confidence I never realized I possess. I even recently accepted an offer to work for my amazing surgeons at MBAS as a patient liaison to help guide other patients through the process of reconstruction. I had no choice in being BRCA1+, but I did have the choice to do something about it, which is a privilege denied to so many before me. I chose to be proactive and I will never take that opportunity for granted. I’ve done the best I can to dramatically reduce my risk of getting cancer, which is a huge relief and priceless gift to my family and myself.

 

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Risk-Reducing Surgery: No Regrets

KarenMalkinby Karen Malkin- Lazarovitz, Patient/Health Advocate

 

I removed my healthy breasts and ovaries and have no regrets.

In fact, I am extremely proud of my decision and would not change a thing.

 

I tested positive for the BRCA2 mutation which gave me an 87% lifetime risk of developing breast cancer and a 40% lifetime risk of developing ovarian cancer.  From the second I found out, I felt like a ticking time bomb. I knew I could control my fate, and so, I dealt cancer a pre-emptive strike!

 

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Today’s Cancer Patient: what should they plan for?

RobinMcGeeby Dr. Robin McGee, Living with Cancer

Recently, I made it to five years post-surgery for stage IIIC colorectal cancer.

Five years.

Technically, by NCI guidelines, I am not a five-year survivor until I reach the anniversary of the last day of my last treatment.   For me, not until April.

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