Angelina’s Diary of a SurgeryPosted: March 24, 2015 Filed under: breast cancer | Tags: Angelina Jolie, Angelina Jolie PItt, BRCA, BRCA1, celebrities with cancer, losing a parent to cancer, prophylactic mastectomy 12 Comments
I just read Angelina Jolie Pitt’s op-ed in The New York Times about her second preventative surgery: to remove her fallopian tubes and ovaries. Just as she did with her prophylactic bilateral mastectomy two years ago, Jolie Pitt writes articulately and openly about her laparoscopic bilateral salpingo-oophorectomy, using imagery and opinions that those of us who have walked in her shoes immediately understand.
She writes, “The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.”
So much clarity. Amidst untold chaos and unimaginable confusion, there is clarity.
She recounts her consultation with the GYN surgeon, who had also treated her mother: “I last saw her [the surgeon] the day my mother passed away, and she teared up when she saw me: ‘You look just like her.’ I broke down. But we smiled at each other and agreed we were there to deal with any problem, so ‘let’s get on with it.’”
I had a similar encounter with someone who cared for my own sweet mama during her cancer treatment. The woman who was my mom’s radiation tech is now a nurse in my orthopedist’s office. I knew as soon as I saw her face that she was the kind practitioner who blasted pointed radiation into my mom’s beleaguered body five days a week for weeks on end. When I encountered her in the orthopedist’s office, I was thrown for a moment because she was out of context. But before long we realized who each other was, and she said the same thing to me that Jolie Pitt’s mom’s surgeon said to her: “You look just like her.”
Stupid fucking cancer.
When Jolie Pitt wrote about her mastectomy in May 2013 she cast the spotlight on the issue of femininity being defined by body parts. After her mastectomy she wrote: “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.” With her latest surgery, Jolie Pitt casts the spotlight on another jarring and difficult result: forced menopause.
Becoming menopausal decades before its natural occurrence is unpleasant, to say the least. The physical and emotional ramifications of forced menopause suck. Really suck. There is no easing into the myriad effects, which can include hot flashes, night sweats, increased sweating, sleep disturbances, mood swings, urinary tract infections, sexual disfunction, memory loss, difficulty concentrating, back pain, joint stiffness, and fatigue. As if that’s not enough, throw in the accelerated aging: loss of elasticity in skin, lack of collagen, hair loss, brittle nails, diminished muscle tone, slower metabolism, and weight gain. Suck. At a time when many women are claiming the best version of themselves (“40 is the new 20!” “I’ve finally come into my own!” et al), early menopause creates instant grannies. Suck. If anyone can shed light on the ugly truths of forced menopause, my money is on Angelina. Yes, she has unlimited financial means and resources unavailable to the average cancerchick, but she also has a platform for educating the masses and she’s gonna use it. Hooray!
At the time of this publishing, there were 321 comments on her story; by the end of the day that number will have climbed. The handful of comments that I scanned were positive, but there are some who chastise her for her choices. I’m always amazed at how ugly people can be with the anonymity that our online world provides. How nice it would be if those cowardly, overly opinionated haters could really digest Jolie Pitt’s reasoning and respect her choice. How nice it would be if they would re-read the last sentence in this segment of her latest essay:
“I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. 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.”
Choose what is right for you personally.
What works for you may not be the same thing that works for me, or for your neighbor or your cousin or the woman who works at your favorite Hallmark store. Cancer, like any disease, is an immensely personal issue, and any and all decisions resulting from a diagnosis should be personal.
The wrong approach?Posted: August 17, 2014 Filed under: breast cancer, Surgery | Tags: breast cancer in young women, cancer of the nipple, CPM, gut instinct, infectious disease, JP drains, micobacterium fortuitum, Paget Disease, post-mastectomy infection, prophylactic mastectomy 7 Comments
In this article for The New York Times, Peggy Orenstein addresses one of the many tricky topics surrounding breast cancer: to remove or not remove the “unaffected” breast?
It’s a tricky topic because the research and prevailing medical consensus are in direct opposition to gut instinct. Research says a bilateral mastectomy in patients with cancer in just one breast has little impact on survivability. Doctors say the odds of surviving low-grade noninvasive breast cancer is the same whether we undergo a lumpectomy or a mastectomy. But our guts often say “lop em both off.”
That’s what my gut told me to do, even after extensive research and number-crunching. My gut instinct leaped immediately to a slash-and-burn tactic. My darling breast surgeon required me to wait at least 3 days before making my decision on the lumpectomy vs mastectomy debate; I complied but my decision was made in the first 10 minutes of grasping my diagnosis. My gut told me to opt for the bilateral mastectomy.
I suppose this puts me in the category of women opting for a CPM, or contralateral prophylactic mastectomy. The experts whom Orenstein spoke to about the CPM debate refer to the increase in women undergoing CPM as “epidemic” and “alarming” and believe it is driven by women not fully understanding the math. Girls have always been bad at math, right? That’s the message I got, growing up in the 1970s in suburban America.
A 2013 study done by Boston’s famed Dana-Farber clinic revealed that women younger than 40 with no increased genetic risk who had cancer in one breast believed that “within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.”
Upon my diagnosis, I understood the math. It wasn’t easy and it was confusing. It took time and effort, but it was not beyond me (having a math guru in the house helped tremendously, but the point still stands). I understood that my chances of successfully removing the cancer in my “affected” breast was the same whether it was done via lumpectomy or mastectomy. I understood that my chances of developing the same cancer in the other breast were slim to none, because, as Orenstein says,”cancer doesn’t just leap from breast to breast.” I understood that low-grade noninvasive lazy cancers don’t typically become deadly; it takes a cancer that metastasizes to do that.
I also understood that a bilateral mastectomy is not an easy surgery. Not by a long shot. As Orenstein so colorfully describes it, “breasts don’t just screw off, like jar lids.” Undergoing a mastectomy involves not only losing the breast itself but also (typically) the nipple and areola, as well as the lining of the chest muscles. Factor in the JP drains that are snaked into the traumatized chest, just to add insult to injury. I couldn’t lift my arms for days after my mastectomy and needed help with the simplest things, such as brushing my teeth and applying chapstick. I needed a new, temporary wardrobe of tops that buttoned or zipped up, because lifting my arms over my head to put on or take off a shirt was a no-go for my battered upper body. I needed help — lots of help — which doesn’t jive with my stubborn and independent countenance.
I knew that choosing the harder road of a bilateral mastectomy over the easier, less-invasive lumpectomy did not increase my odds of surviving breast cancer. At least according to the studies. I knew that a mastectomy is much riskier than a lumpectomy. I knew that recovery would be much harder and more time-consuming. Nonetheless, my gut told me to take that more difficult road. My gut was right.
Orenstein spoke to Steven J. Katz, a University of Michigan professor of medicine and health management. He studies medical decision-making, and has found that people tend to react from the gut when confronted with a diagnosis because we are wired to make “fast-flow decisions” that make us want to flee. Understandable to anyone who has been on the other side of the doctor delivering bad news. Upon diagnosis, Orenstein recalls feeling “as if a humongous cockroach had been dropped onto my chest. I could barely contain the urge to bat frantically at my breast screaming, ‘Get it off! Get it off!'” Her version involved a giant cockroach; my version involved a scorched earth.
Dr. Katz says that doctors need to understand how our gut reaction affects our post-diagnosis decision. He speaks of “the power of anticipated regret: how people imagine they’d feel if their illness returned and they had not done ‘everything’ to fight it when they’d had the chance. Patients will go to extremes to restore peace of mind, even undergoing surgery that, paradoxically, won’t change the medical basis for their fear.”
It is a paradox: our intellectual self versus our gut.
Orenstein points out that “it seems almost primal to offer up a healthy breast to fate, as a symbol of our willingness to give all we have to and for our families. It’s hard to imagine, by contrast, that someone with a basal cell carcinoma on one ear would needlessly remove the other one ‘just in case’ or for the sake of symmetry.”
While it may be hard to imagine, there’s no way to predict how one will react to a cancer diagnosis. All the studies and statistics are worthless in the face of the worst-possible scenario, which is facing cancer. I was 40 years old, with 2 kids under the age of 10, when I faced that scenario. Of course I thought of them and the possibility of leaving them motherless and rudderless. Having lost my own sweet mama brought that into even clearer focus. Perhaps my decision to undergo a CPM was based more on emotion than on rational thought. No doubt my gut was driving that bus.
But guess what? My gut is a careful and prescient driver. In steering me toward the more-radical surgery option, my gut saved me. Maybe saved my life, but definitely saved me from undergoing a second mastectomy, one that would most definitely not have been of the CPM variety.
My “unaffected” breast had cancer, too. And Paget disease to boot. Nothing had showed up on any of the myriad tests or scans I’d had before my mastectomy. It was the surgical pathology on the “unaffected” breast that finally revealed those cancers. How long would those cancers have grown, unannounced and unaccounted for, had I not followed my instinct and listened to my gut? I don’t like to think about that.
I’ve learned — the hard way, of course — that I’m one of those medical weirdos whose body does not conform to standard protocols. I’m the kook who gets the weird stuff; to wit, Paget disease accounts for a mere 1 to 4 percent all breast cancers, according to the National Cancer Institute. Ditto the post-mastectomy infection I contracted. Who gets a microbacterium fortitum?? So few people that my infectious disease team — yes, I had a team of ID docs — still wonders where the hell that originated.
We medical weirdos don’t fit into studies or facts or figures. We are the ones who keep their doctors up at night, scratching their heads and wondering what?? what?? what is going on here?? We are the ones for whom the “if it can go wrong, it will” axiom applies. We are the ones who make other people reassess the shittyness of their situation (you’re welcome, by the way).
We are the ones who follow our gut and don’t look back. Is that the wrong approach? Not for me.
Preventative mastectomies under firePosted: January 23, 2013 Filed under: breast cancer | Tags: Allyn Rose, Allyn Rose mastectomy, Paget Disease, preventative mastectomy, prophylactic mastectomy, yoga positions 22 Comments
Right before I left for yoga today, I read a blog post that got my blood boiling. Not a good state of mind for walking into yoga, right? The main reason I put myself through yoga is to calm my mind. Getting all riled up right before class doesn’t quite fit the mind-body-spirit calm I’m trying to achieve.
I spent the first part of the class kicking myself for not being able to stop thinking about the post. I spent the second part of the class kicking myself for allowing myself to get so worked up and for feeling as if I need to butt in and right the wrongs that occur on any given day in suburbia. I guess I’m like 50 Cent, who says he’s a writer and a fighter. I don’t fancy myself much of a writer (I just convey what’s in my head onto the computer screen and hit “publish”) but I suppose I am a fighter. I knew I would not put the issue to rest but would blog about it myself. (I’m not including a link to the post that got me so fired up because I don’t want to drive any traffic to that site.)
Fighting is the last thing I want to think about as I enter the darkened yoga room with calming music and tinkling wind chimes, and I sure didn’t want to interrupt my pursuit of a good stretch and a quieted mind. I came up with many reasons why I should leave it alone — when I should have been inhaling and exhaling and seeking that inner peace. I talked myself off the ledge while downward-facing-dogging. I scolded myself for being a rabble-rouser while I planked. I reminded myself that I need not be a crusader of truth and justice as I reclined in pigeon. As the instructor asked us to set our intention for the class, I visualized a blackboard with myself writing “I will not blog angrily” over and over, Bart Simpson style.
It was all for naught. My futile attempt to leave it alone, to let it go was just that — futile. I blame some of it on our yoga instructor. She led me to do it. Indirectly, of course. As we went through the palm pose, she mentioned that the beauty of the palm is that it can bend and sway with changes and things that don’t matter, but for things that are important, the palm can stand firm.
That did it. I’m not much of a bending, swaying palm but more of a stand-firm palm.
The topic of the blog post that got my palm-fronds in a twist? This woman.
Allyn Rose, Miss Maryland, who competed in the Miss America contest 10 days ago.
She didn’t win the pageant, so why is some half-baked blogger (the other guy, not me) blogging about Rose? Because Rose is planning to undergo a preventative bilateral mastectomy this summer.
Quick back story: Rose’s mom died from breast cancer at age 50; Rose was just 16. Her grandmother and great aunt also died from breast cancer. She said, “I had to become my own mentor. I had to go pick out my prom dress by myself. I had to go to my high school graduation without my mom. She didn’t see me go off to college or go on my first date or drive a car for the first time.”
Despite the existence of a genetic anomaly in this family that causes women to get — and die from — breast cancer, the other blogger has judged her harshly, saying that she’s buying into a culture of self-mutilation and that popularity and that acclaim are just one surgery away. Even more disturbing is his comment that preventative mastectomies are butchery. See why it was so hard for this palm to bend and sway?
The backlash that is raining down on Rose is harsh, both in the form of the comments on Mr Half-Baked’s blog and comments from medical professionals on the subject.
Sandra Swain, medical director of Washington Cancer Institute in Washington, DC, fears that women who have lost family members to breast cancer could take Rose’s example too literally. “We’re seen a rise in prophylactic mastectomies and a lot of it is not for a medical reason; it is because of fear and anxiety,” she said.
What?? The idea that a medical professional would downplay the role that fear plays in cancer is sick. Guess what, Sandra — cancer is scary. Watching someone you love die from cancer is scary. Wondering if you’re next is scary. I’m going to go out on a limb here and say that every aspect of cancer is scary. Second, the implication that women would choose to undergo a prophylactic mastectomy because Miss Delaware suggests it is ludicrous. Is this the same mentality that drives advertising execs to create campaigns that imply that if a man uses a particular brand of shaving cream, a hot, scantily clad woman will be all over him in his bathroom?
More backlash via a New York Times article published yesterday, in which researchers throw out some numbers on preventative mastectomies: “As many as 15 percent of women with breast cancer — 30,000 a year — opt to have both breasts removed, up from less than 3 percent in the late 1990s.” Is this rise because of hysterical women making rash decisions, as Swain suggests? Or is it based on improved screening that finds breast tumors earlier? Or is it attributed to the fact that despite what Komen wants us to believe, precious little progress has been made in 30 years and that women continue to be diagnosed with and die from a disease that has no cure? The NYT article goes on to say that “it appears that the vast majority of these women [getting preventative mastectomies] have never received genetic testing or counseling and are basing the decision on exaggerated fears about their risk of recurrence.”
The feminist in me is disgusted by the implication that women make such rash decisions. What if a man chose to have a preventative prostatectomy if he had a family history of the disease? Would there be an article in The New York Times about it, with so-called health experts criticizing him and implying that he made a snap decision? I defy these talking heads to find a woman who so breezily agrees to have both her breasts removed in a long surgery with an even longer recovery. Trust me, this decision is made with careful consideration of the gut-wrenching pros and cons.
How about this part of the NYT article: “In addition, doctors say an increasing number of women who have never had a cancer diagnosis are demanding mastectomies based on genetic risk. (Cancer databases don’t track these women, so their numbers are unknown.)”
If cancer databases don’t track these women, how can doctors know that more of them are demanding mastectomies? Is this yet another example of how women in this situation are patronized?
Dr. Isabelle Bedrosian, a surgical oncologist at M.D. Anderson Cancer Center right here in Houston spoke out on this issue, saying “We are confronting almost an epidemic of prophylactic mastectomy. I think the medical community has taken notice. We don’t have data that say oncologically this is a necessity, so why are women making this choice?”
If you believe the NYT article, women are making this choice because they have nothing better to do. Come on, man.
To Dr Bedrosian, I say that until prophylactic mastectomy rates actually do reach epidemic status, perhaps we should focus on the fact that breast cancer is the epidemic here, not the surgery used to get rid of it.
Can we consider for a second that women like Rose, with horror-story caliber genetics, are proactive about their health? Can we entertain the idea that maybe women are willing to sacrifice their breasts in order to avoid a disease that kills nearly 40,000 women a year in this country alone? Can we realize that there are countless women around the globe who’ve watched their mother/sister/aunt/cousin/grandmother die from a relentless disease, who don’t want that same fate to befall them? Where’s the database on women like me, who chose a bilateral mastectomy although cancer was found in just one breast, only to discover post-mastectomy that the other breast was also infected? Had I not opted for a bilateral, the other breast–which contained a cluster of cancerous cells that measured 5 cm in diameter, as well as Paget Disease to boot–would become a ticking time bomb. Who knows, perhaps the cancerous activity in the other breast might not have been discovered until it was late-stage and hard–or impossible–to eradicate. The idea that any woman makes the decision to have a bilateral mastectomy willy-nilly is beyond insulting.
I’m tempted to treat Mr Half-baked blogger to a brief history of my own cancer diagnosis, at age 40, and the bilateral mastectomy I had while my kids were 8 and 10 years old. I would recount how I was unable to lift my arms for a week, and had to have help to wash my face, brush my teeth, change clothes, and feed myself. I would explain that in addition to losing both my breasts, I contracted a nasty infection 3 weeks later that kept me hospitalized for nearly a month — while my 10-year-old son’s baseball team went to the State Championship — and required multiple rounds of IV antibiotics and oral drugs for nearly a year. I would mention that while I’m currently NED, not a day goes by that I don’t worry about recurrence, and that after undergoing reconstruction that was deemed successful, I am still confronted daily by the scars that serve as a blatant reminder of the disease. I would concluded my rant by asking if he still feels qualified to judge a woman for “mutilating” her body.
I hope AJ has unpluggedPosted: May 17, 2013 | Author: pinkunderbelly | Filed under: breast cancer | Tags: Angelina Jolie, bilateral mastectomy, BRCA, breast cancer in young women, cancer in young women, criticism for mastectomy, genetic risk and breast cancer, negative comments to cancer patients, New York Times op-ed piece, prophylactic mastectomy | 16 Comments
The backlash surrounding Angelina Jolie’s announcement that she has a prophylactic bilateral mastectomy is a lot of things: stunning (not in the good way), discouraging, upsetting, disgusting, rage-inducing, sad…the list is long.
I keep telling myself to just stop reading the negative headlines and judgmental comments, but I can’t. I’m drawn to them like a thirsty girl to a sparkling glass of bubbly.
The comments range from stupid to mean to crazy. This crackpot goes way out on a limb with a conspiracy theory (thanks to my friend Katie for alerting all of us to this blood-pressure raiser). A couple of gems from Mike Adams, who calls himself the Health Ranger, but whom I’m calling Senor Crazy-Pants:
According to Senor Crazy-Pants, we could avoid cancer with a healthy diet and lifestyle. So it’s my fault that I got cancer, even though I don’t eat meat, choose organic, strive for a plant-based diet, and avoid processed foods and environmental chemicals.
“This is no less than a media stunt to gain more market share to stay up high on the A list.” Right. As if her every move isn’t chronicled by papparazzi. Going to the grocery store is People-worthy news for her.
“RIP Angie’s boobs. You had options, dummy!” And what options would those be? Living in fear? Wondering if this year’s well-woman exam would turn up a lump? Hide under the bed and hope it all blows over? Who’s the dummy here?
“Angie cuts off her boobs, Brad’s gonna be f****** the nanny!” Yes, because nice boobs are the only reason a man would want to be intimate with a woman.
“What a waste of a bangin’ set of boobies.” The waste here is that this commenter is alive and breathing air while Angelina’s mother is dead from ovarian cancer.
“Angelina Jolie’s boobs have been removed…I’ll never smile again.” I’ll give this tweeter partial credit for being creative, but that’s it.
“Because you can never be too careful these days, with the cancer industry scaring women half to death at every opportunity. ‘My breasts might murder me!’ seems to be the slogan of many women these days, all of whom are victims of outrageous cancer industry propaganda and fear mongering.” Damn that cancer industry and its propaganda and fear mongering!
“Being an empowered woman doesn’t mean cutting off your breasts and aborting live babies — even though both of these things are often celebrated by delusional women’s groups. Being an empowered woman means protecting your health, your body and your womanhood by honoring and respecting your body, not maiming it.” Damn those delusional women’s groups. And I guess I missed the news story that Jolie had a late-term abortion as well as a mastectomy. Were they at the same time?? Did the “highly unprofessional” surgeon referred to in a previous comment perform the abortion, too?? Is that covered by insurance??
One of my fellow bloggers had a much more useful comment. When I read it, I copied it and pasted it, but forgot to attribute it, and now I can’t remember who wrote it. Apologies, ladies. If this is yours, please tell me so in the comments section so I can thank you properly. “There are no ‘good’ choices in such cases: only bad and worse ones. Making them in Jolie’s situation, when your own mom has died of cancer, is even harder.”
Truer words are seldom spoken (or typed). While I’m a proponent of freedom of speech in general, I wish there were a rule that prevented idiots and mean-spirited fools from spouting off on something with as much gravitas as Jolie’s decision. I wish there were a policy stating “If you haven’t had cancer, your voice will not be heard.” I wish there were an amendment upholding the right of those of us who’ve lost a beloved member of our tribe to speak about the pain and grief and unfillable hole left by that person’s death. I wish there were a mute button to be used when people spew garbage about a situation in which they know nothing.
I really wish that everyone who takes the time to render their judgement and register their opinion on a total stranger’s wrenching choice would read Jackie’s post on this heated topic:
thank you, google images, for providing such lovely graphics.
sorry about the formatting; not sure what’s up with that.