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If Angelina Jolie and I Could Chat, Part 2

Two years ago when Angelina Jolie startled the world by sharing about her decision to undergo a prophylactic bilateral mastectomy because of her high cancer risk due to her BRCA1 positive status, reaction was swift and widespread. People came out of the woodwork offering their opinions and reactions to her personal, yet publicly shared decision. I wrote about my reaction too. You can read that post here if you’d like. Recently, after a cancer scare, Ms. Jolie shared about her decision to go ahead and have her ovaries and fallopian tubes removed as well.

For various reasons, often I am totally annoyed when celebrities share their cancer stories, not because they share them, but how they do so. I didn’t feel that way when Ms. Jolie chose to share hers. As a BRCA+ “sister,” am I biased? Maybe. Maybe not.

Of course, Ms. Jolie hasn’t had cancer herself, so her story isn’t really her cancer story. More accurately, it’s her previvor story. However, her mother, grandmother and aunt died from cancer, so she’s had a front row seat to the horrors of cancer. She understands her elevated risk all too well.

Why wouldn’t she do everything in her power to try to avoid a cancer diagnosis herself?

I understand what it’s like to watch your mother die from cancer. I understand what it’s like to learn you are BRCA+. I understand about the tough decisions you are then forced to grapple with. I understand about weighing the pros and cons of such decisions. I understand the fear. I understand the complexities and heartache of giving up body parts as a preventive measure.

One thing I do not understand is how so many complete strangers felt and feel compelled to judge decisions women such as Ms. Jolie make.

Of course when any celebrity goes public with such personal information, they open themselves up to scrutiny, criticism, judgement and yes, even ridicule. Following Ms. Jolie’s round two revelation, I refrained from reading the outrageously uniformed comments. Mostly anyway. Clearly, many people do not and never will understand, so why waste my time and get myself worked up over that nonsense? No thank you.

I heard it expressed by some (this is not the outrageous type) that they felt Ms. Jolie potentially alienated some in the cancer community because she didn’t more fully embrace those dealing with cancer, especially those with a stage IV diagnosis. There was concern her op-ed piece was potentially divisive. I didn’t feel it was.

I also heard it expressed that perhaps Ms. Jolie was sharing too much information with her most recent revelation announcing she had chosen to have a laparoscopic bilateral salpingo oophorectomy. I feel it was vital that she did share this important piece of her previvor story. In fact, one criticism I had made in my part 1 piece was that she seemed to gloss over the ovarian cancer risk too casually. I was wrong. Clearly Ms. Jolie was, and has been seriously contemplating this preventive surgery all along.

Sharing her decision to remove her ovaries was just as important as sharing about her prophylactic bilateral, maybe even more so. Granted ovary talk isn’t quite as enticing as breast talk, so her latest revelation perhaps spurred somewhat less interest. I also think it takes a lot of self-confidence to openly state you are menopausal, even when you are Angelina Jolie. This topic is still somewhat taboo and some would say that menopausal women are less ‘valued’ by society.

So once again I want to say that I admire Ms. Jolie for stepping up and speaking out.

One thing I must stress (again) is that giving up body parts is hard physically and emotionally and this should never be downplayed.

Yes, knowledge is power. Taking proactive steps is empowering, but the harsh reality is that these surgical options totally suck.

If I have one criticism of Ms. Jolie’s revelations, it would be implying (unintentionally of course) that these preventive surgeries aren’t that horrible. I am glad she feels just as feminine, just as beautiful, just as strong as she did before her surgeries. I do not. Not even close. Of course, I have wrestled with the cancer beast personally and obviously, was never drop-dead gorgeous.

My point is, I don’t care if you’re a glamorous movie star or someone’s grandmother living down the street; lopping off body parts is hard to do. The decisions to have these surgeries, prophylactic or otherwise, are not made with a cavalier mindset. Giving up inner body parts that represent femininity and fertility is tough as well, no matter who you are or what your age. Body parts are there for a reason, even when they are “merely” internal place holders.

Sacrificing body parts, especially the ones that represent our womanhood, is no small matter and when they are removed, they are losses which may require grieving. There is no shame in this.

I appreciated how Ms. Jolie stated that her choices are not necessarily the choices others should make. She stressed the need for women to learn about and understand all their options. Even when you are BRCA+, there are options, though none of them are very good. In Jolie’s words:

A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options… There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.

Well said.

Ms. Jolie handled herself well in the public eye again. Perfectly – no, but who among us is perfect? And her message is really for all women, BRCA positive or not – regarding your health, gather all the information you can and make the decisions that are right for you.

So, if Ms. Jolie and I could chat this time what would I say?

I’d say, I’m very sorry your mother died from cancer. And your grandmother. And your aunt. I would say I’m sad that your children will not have them in their lives. I’d say good for you for making these tough choices and thank you for sharing with the world about them. In doing so, you are potentially saving lives and we are grateful. I would say, keep sharing your story. It matters that you do.

Because everyone’s story matters, including hers, mine and yours.

What do you think of Angelina Jolie’s decisions to go public with her surgery decisions?

Have you had any sort of prophylactic surgery or would you ever consider it?

Did you feel Ms. Jolie’s opinion pieces were divisive in any way?

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Beth L. Gainer

Tuesday 14th of April 2015

Hi Nancy,

I admire Ms. Jolie's courage for being honest with the general public. Years ago when she had her prophylactic bilateral mastectomy, I wondered if she was considering the other surgeries. It's clear she was.

My bilateral mastectomy was prophylactic, and I know it was the right decision. My supposedly healthy left breast was filled with precancerous cells, according to the pathology report, and my oncologist said it was the right move for me. Of course, the surgery and body image issues took a toll on me, but I'm still glad I had the surgery and reconstruction. It was the right decision for me at the time.


Wednesday 15th of April 2015

Beth, I admire Ms. Jolie too for coming forward when she could just have easily, no, more easily, kept things private. Thank goodness you made the decision you did back then about your prophylactic surgery. Definitely the right move for you. Thanks for sharing.

Ray Rippel

Thursday 9th of April 2015

Nicely written, but I almost experienced a snort-your-tea-through-your-nose moment when I read "One thing I do not understand is how so many complete strangers felt and feel compelled to judge decisions women such as Ms. Jolie make."

You seem like a well-informed person. Do you really find it that hard to believe that complete strangers want to tell other folks how to live their lives? Don't we have perfect strangers telling us what kind of health care we can buy (or that we must buy it), how much money we can contribute to the political causes we think are important, or--God forbid--own a gun.

If you truly think that Ms. Jolie, as an adult, should be able to make her own decisions, shouldn't everybody, about as much as possible?


Thursday 9th of April 2015

Ray, My point was that I don't understand the judgmental attitude toward women who are making these personal choices about their health care and their bodies. I don't see this as the same thing as people telling others what to do about money contributions to charitable causes or owning a gun or not. Removing body parts to avoid cancer is on a completely different level. And of course, adults should be able to make their own decisions about most things, but some things are for the greater good and perhaps not best left up to an individual. Thank you for reading and sharing some thoughts.

Lisa DeFerrari

Thursday 9th of April 2015

Hi Nancy, I thought the recent article by Angelina Jolie was excellent. It struck me that she wanted to put at least as much emphasis on the process she went through to arrive at her treatment decision as the choice of treatment itself. As you said, she made it very clear that she is not saying her choices are necessarily the choices others should make but that women should learn about and understand their options. I think she wanted to show that women can and should be proactive in managing their health care choices, whatever their situation, and I think she is very much to be commended for doing that.


Thursday 9th of April 2015

Lisa, I agree. I thought Ms. Jolie was very careful to stress that her decisions are just that, hers. Encouraging women to be proactive in managing their health care choices, brca+ or not, that is her primary message it seems to me. I commend her as well. Thank you for adding to this discussion.

Leslie Gotlieb

Thursday 9th of April 2015

Nancy you have given me something to think about. Thank you. I am glad she publicly did this, of course, because the conversation is so important and she definitely generates it. What I don't love, is that her access is so vastly different from the rest even though she acknowledges this. I am just unsure if it helps to set the bar at her experience, which I think is what happens sometimes. Thank you for this post!


Thursday 9th of April 2015

Leslie, We can't fault Ms. Jolie for having good access to quality care, and yes she did acknowledge the disparity. The fault should lie with those who say everyone doesn't deserve the same. Everyone deserves top quality care IMO. I believe it's a right and I hope Ms. Jolie is working to better the care of others less fortunate financially than she is. I have a feeling she might be. Thank you for reading and commenting too.


Thursday 9th of April 2015

Nancy, what a powerful post, I immediately thought of Lisa and what she wrote:

"I told myself “they’re only breasts.” I said, “I don’t need ovaries, I’m done having children.” But that obscured the truth. The truth is that it did matter, They do matter."

I admire Angelina Jolie for saying that she's in menopause--no it's not sexy and it does matter. We make these literally painful decisions with great thought and need, but the risk/benefit analysis doesn't negate the loss.


Thursday 9th of April 2015

Kira, I remember those words of Lisa's. They are so true. It does matter. And you're so right about the losses. They matter too. Thank you for reading and sharing.

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