Heads up: Graphic discussion of breast reconstruction
I might enjoy an Angelina Jolie film now and then—in fact she was brilliant in Girl, Interrupted—and I’m glad she has given her name and face to some good causes and that she has filled her family with children who might not otherwise have had a loving home, but historically I have been known to side with Team Anniston.
So it caught me off guard a few weeks ago that I felt great sympathy for Jolie when she made her big announcement. I feel for her, I really I do. And then an old college friend innocently posted an article on Facebook and asked kindly for thoughts. The article by Mike Adams (which I purposefully won’t link to here) boldly condemned modern oncology, belittled Angelina’s difficult choice, called the science of cancer risk “quackery” and basically blamed big pharma for all of it.
Is the medical community spotless? No. Could we all use more veggies and exercise? Yes, definitely. These things can have an impact on certain cancers. But the article was a poorly disguised attempt to get people to buy expensive supplements that have not been proven to kill aggressive, genetically linked cancer cells. I’m sorry, they just haven’t been. If you would like to convince me that they have been and that places like City of Hope are just ignoring them and letting people die to be cruel, go ahead and try. I had my genetic testing at City of Hope. I get their newsletter. They are pretty straightforward and holistic in their approach to treatment. In fact, when it was found that white button mushrooms can aid in cancer prevention, I read it in their newsletter first. So I’m a little skeptical when people boldly condemn modern oncology. This is not to say that alternative medicine does not have merits, because it does. However, let’s not forget that alternative cancer treatment centers are making a lot of money too before we throw out modern oncology with the “big pharma is evil” bathwater.
And I have to tell you, what bothered me even more than the article were two of the reactions to the article on my friend’s Facebook page, and it’s those comments that have prompted this post. First one woman asserted that Jolie was desperate for attention (yes, you read that right) and then another commenter, a man, declared that Jolie’s double mastectomy was a selfish act of cowardice that was indicative of our self-centered culture.
To say that these Facebook comments offended me is probably an understatement. Facebook rage might be a better term for it. I tried to be calm, but my blood boiled. I quickly responded with my own thoughts as did another breast cancer survivor, both of us trying to get the point across that Jolie was not selfish (quite the opposite), was not cowardly (she did a brave, hard thing), and had not gone through the difficult surgeries of reconstruction “for attention.”
Of course, I don’t know Angelina Jolie. I don’t know her medical history other than what she has shared recently. I wasn’t in on the many conversations she had with genetic counselors and doctors—and you do have many conversations with genetic counselors and doctors when you are tested for BRCA 1 or 2 and before undergoing a double mastectomy. No, friends, you can’t simply go into the doctor’s office and tell him or her you’d like to schedule a mastectomy pronto, no matter who you are. It just doesn’t work that way. There would be a lot of questions first. (After all, would you want to be the doctor who removed Angelina Jolie’s breasts on a whim?) And I personally don’t know any woman who would do such a thing without considerable thought and tests and lengthy conversations. I don’t know anyone who would do it “for attention.” (We would never accuse a man of having his testicles removed “for attention” would we? No, somehow I doubt we would.)
Just think about who Jolie is. She is a woman who has made her career (in part) because of her beauty. Yes, she’s a fine actress, but there is no denying that her beautiful face and—let’s call it like it is—her kickin’ body have fed her notoriety and fame. As every woman with reconstructed breasts knows, they can do a pretty impressive job these days, but there’s nothing like the real thing. Thanks to modern surgical technology it sounds like Jolie was able to keep her nipples (which is not common), but the potential for any sensation in them is iffy. (Somewhere between 40-70% of women who try to keep their nipples won’t regain sensation.) And as for the rest of her breasts, you have to understand … they’re gone. This is not a “boob job.” While I don’t know the details of her surgery, I know that her breast tissue was removed, because that’s the whole point. Her breasts were cut out from her body. Friends, this is amputation. Please don’t be so jaded by all of us walking around with reconstructed breasts that look pretty impressive when confined to our swimsuits to imagine that this is not a life-altering surgery that leaves pretty intense scars emotionally and physically.
Tonight I saw my real breasts for the first time in years. They live on in old home videos, where I can be seen frolicking in the Merced River and in the Pacific Ocean with my then-small children in a two-piece swimsuit. And—again, straight talk here—my children weren’t the only things that were small back then, but those breasts were mine and (except for trying to kill me) they weren’t half bad.
I delayed reconstruction after my own double mastectomy, and I’ll never forget seeing my chest for the first time after the surgery that removed the cancer—which turned out to be more extensive than my doctors expected. I had an invasive tumor under my arm, but the rest of my breast was filled with still-non-invasive ductal carcinoma in situ (DCIS) that had been going undetected for God only knows how long, despite the fact that atypical hyperplasia had categorized me as high risk for the previous three years, during which I saw an oncologist every six months and had regular screenings and even biopsies. (Deep breath.) Dense breast tissue can be very hard to work with. If cancer is not big enough to be palpable, it can be very tough to spot it. (Ahhh, detection. Another post for another day.)
Late in the night after my double mastectomy, I was handed a small hand mirror and a nurse removed the bandages to reveal the two long incisions that had replaced my feminine curves. (Hey, they were small, but they were mine.) What no one told me that night is that I would have strange phantom pains—the sensation of being horribly engorged after having a baby—off and on after the surgery, through chemotherapy, and all the way until reconstruction began seven months later. Phantom pain. I really didn’t see it coming, but it only makes sense.
What is breast reconstruction like? In a word: PAINFUL. While Jolie’s reconstruction process may have been different, I personally went through three more surgeries and countless weekly appointments where a long needle was inserted in each breast expander to inflate them and help me grow new skin. By the time my skin was stretched and grown enough that real implants could be inserted, my left shoulder had suffered damage from the strain of the expanders that it’s never quite recovered from. At times the pain was agonizing and made sleep difficult. We stopped the process a little sooner than my surgeon had planned, because I just didn’t think I could handle even one more fill. This is not—no, it’s just not—something one does for the attention. This is another form of suffering. And while the suffering is now down to a bare minimum of aches and pains for me and I’m content with the final results, my breasts are cold to the touch—both literally and figuratively. They aren’t real.
Big deal—I can hear some of you saying—lots of women have fake breasts.
Yes, while a woman having implants is hardly a big deal in this day and age, when your breasts have been entirely manufactured over a months long process—the nipple created with stitches and the areola pigmented with tattoo ink—it’s a little different. Please don’t equate or compare the two.
Let’s talk for a minute about what drove Jolie to do this hard thing, walk through whatever reconstruction process she underwent, over the months that it took. Please hear me when I say: She was not merely “afraid of getting cancer.” But lets consider for a moment if that’s all it were: fear. When ovarian and breast cancers have taken close family members at fairly young ages (as they did in her case), you are automatically considered to be at a higher risk for these cancers, even before you have genetic testing. You and I have no idea how many times Jolie has felt a tiny cyst or a clogged milk duct and spent sleepless nights waiting for a doctor to tell her whether or not her number was up. And when people have cancer scares the people who love them have cancer scares too. I know because I had many in those three years of being classified as high risk before my time came. They are not fun and each time they are more draining, more scary. You wait for appointments and then you wait for testing and then you wait for results and it can be a gut-wrenching process. I’m sad to say that sometimes, even when good news comes at the end of the process, it can be difficult to feel relieved.
There. I said it.
Of course not having cancer is good news. Of course it is. But when you are high risk an “it’s not cancer” telephone call just means that you will continue to have these seasons of panic again. And again. And again. And again. And the only forseeable end to the seasons of panic is an actual diagnosis of cancer, because then you can find out what you’re dealing with and get it over with.
I don’t expect it to make sense, because it doesn’t. I’m just trying to express how hard it is to live in that uncomfortable tension, to sit in an oncologist’s office again and again, next to people much older and much younger in various states of treatment for cancer and to fully recognize how blessed you are not to be in their shoes, but also to know that you might join them one day, only you can’t know when or for how long and how it will end.
Friends, being high risk is like being stuck in that waiting room between the healthy and the sick indefinitely. In fact, that’s exactly how it was for me. Not sick. Not healthy. And though I was high risk before an invasive cancerous tumor finally grew, I was not nearly as high risk as Angelina Jolie.
As I said, this wasn’t just about an emotional fear. At some point Jolie did get genetic testing and, as fate would have it, she had a BRCA 1 mutation that gave her an 87% chance of getting breast cancer. Please wrap your brain around that number with me, because this is not about emotions or speculation, this is the science of cancer. It’s all about numbers. The average woman has a 12.2% risk (approximately 1 in 8). Jolie’s chances? Almost 9 in 10. Think of it this way. If you’re the average woman without a family history of breast cancer, Jolie was as likely to GET breast cancer as you are NOT to. Or think of it like this: If you lined up 10 women with her BRCA 1 mutation, only one (ONLY ONE) of them is NOT going to get cancer.
Her risks were very, very serious, friends, and while it may seem like a ploy for attention or an act of cowardice to those not as familiar with BRCA 1 and 2 mutations, it is actually fairly common for women in her shoes to be advised to get a double mastectomy as a preventative measure. Some insurances even pay for it. They know you are probably saving them money in the long run, and that should tell you something. What’s more, Jolie’s risk of ovarian cancer—an often deadly disease—is 50%. The average woman’s risk of getting ovarian cancer is 1 in 58. Jolie’s is 1 in 2. Again, huge odds, which is why she will eventually have them removed. Are we going to accuse her of just seeking attention then too?
But, I hear people say, breast cancer is not ovarian cancer. Breast cancer can be cured, they are curing more people all the time. Sure, they are. But not everyone can be cured. People still die of breast cancer. In fact, here in America over 100 women die of breast cancer every day. That’s four every hour. Every. Single. Day. So, don’t speak to me of how easy it is to “survive” it, because so many women don’t.
So, yes, I defended Angelina Jolie. In public. On Facebook. Because she did something hard, something brave, something that includes no small amount of suffering and loss and (I would bet my life) a lot of tears. And it’s not attention she’s after by going public, it’s a chance to educate a lot of women and save lives. Well, some will say, who doesn’t understand genetic cancer risk these days? Well, the people on Facebook who accused her of being a selfish, cowardly attention-seeker for starters. Obviously, they prove the point that we still have some educating to do.
Breast cancer is complicated. It is. There are different kinds of breast cancer too, more than the average person realizes. Knowing your risk can be complicated. Talking about it and making decisions can be complicated. Jolie has seized the opportunity to say, in a nutshell: Find out if you’re at risk. Educate yourself. Take care of yourself. Do what you and your doctors think is best. (And it’s working, by the way. More women are calling their doctors for information on their risk and that’s exactly the person who can help them understand whether or not they have anything to worry about.) She’s not advocating for mastectomies, she’s advocating simply for health.
Because she watched her mother die of cancer. (Ovarian.) I haven’t done that lately. Some of you have, and I’m so sorry. She—unlike many of us–knew exactly what that 87% chance of getting cancer could look like and how it could end, for her and for everyone who loves her, including her children.
So I applaud her. I say: I hope they look great, I hope you feel good, I hope this spares you and your family that pain. Team Anniston be damned, when it comes to women’s health I gotta say I’m Team Jolie all the way.