Early detection, Health & Wellness

What We Can Learn from Angelina

By Dr. Shelby Terstriep

May 21, 2013

Angelina Jolie

Photo: Dan Kitwood/Getty Images from nymag.com

Right after Angelina Jolie’s courageous op-ed was published in The New York Times, Lifescript, a website dedicated to women’s health, asked my perspective, as director of the embrace survivorship program and medical advisor to the Edith Sanford Breast Cancer Foundation, about issues women encounter after a double mastectomy like Angelina’s.

My responses are included in a comprehensive article that also includes the insights of a breast cancer surgeon and geneticist. I’ve included some highlights below, because I think this is such an important topic, and I want women to take the time to educate themselves and fully understand all the options.

The news was on my brain all week, and I was interested to know what people around me thought about it. I polled my patients and every person felt that Angelina opening up to the public was a very positive thing for women. Some said “powerful” and “if there is a star then she’s the one.” Others felt it was great to hear that she hasn’t let it negatively affect her sexuality, although some didn’t have the same experience in that regards. I would agree that often women don’t have that same experience but I think that having role models like her not letting this affect her sexuality is great.

What I loved about the well-written, thoughtful statement is that it took a very holistic look at the situation. It touched on her personal family experience, her journey, integrative care, sexuality, caregiver support, financial aspects, and motherhood. I think it shows the complexity of cancer and cancer prevention and I applaud her for painting a very real picture for the public.

A fellow BRCA survivor who has also had bilateral mastectomies jokingly said “ I knew if I dug deep enough, there would be something I had in common with Angelina Jolie!”  I laughed out loud at that one!

What do you think about it? Tell me your story of living with a genetic cancer syndrome.

Angelina Jolie Has Preventive Double Mastectomy
Hollywood Star’s Procedure that Reduces Her Risk of Breast Cancer
By Diane Wedner, Lifescript Health Writer
Published May 14, 2013

 

The implications of a BRCA gene mutation.
(Ora Gordon, M.D.)

Why do you think Angelina Jolie made the decision to undergo surgery, even though she didn’t have breast cancer?
Those who carry the BRCA1 mutation are at high risk for an aggressive breast cancer, called triple-negative. It’s almost always more challenging to treat.

One of strongest driving forces for having surgery is losing a mother to cancer. That experience, and weighing your own risk, contributes to the decision.

I’ve found that about 40% of women who have the mutation but haven’t been diagnosed with cancer have the preventive surgery.

Who should get genetic testing, and why?
Anyone who has any family history of cancer – breast, ovarian, or [both] colon and breast – needs to tell her primary care provider and seek a formal genetic risk assessment.

 

Guidance on Preventive Surgery
(Catherine Dang, M.D.)

Once you discover you have a BRCA mutation, what are your choices?
One option is high-risk surveillance [frequent testing]. Most patients do that if they’re young when they get their results. They may not want surgery because they’re not in a relationship yet or don’t know whether they want children.

When is surgery considered?
I find that after a couple rounds of screenings, many patients decide to get the surgery, because they don’t like the stress of frequent tests and worrying whether [doctors are] missing something.

 

Issues Women Encounter After Surgery
(Shelby Terstriep, M.D.)

How does a mastectomy affect women emotionally?
It can have a great impact on a woman’s body image. There’s a sense of loss of womanhood. [But] immediate reconstruction can mitigate that feeling.

We try to counsel patients before surgery to visualize what they’ll look like, what it will feel like and to talk to others in a support group. I find that most women who choose preventive mastectomy wouldn’t go back to [a time when they were] worrying about getting cancer. They’re glad they did it.

Angelina Jolie, in her colorful statement about her mastectomy, said she still feels powerful – that’s a great way of putting it. When someone beautiful like Jolie says she still feels beautiful and you can too, that’s huge.