Tag Archives: Angelina Jolie

For those of you just joining us …

HELLOI’d like to take a minute to say welcome to new visitors and subscribers! Thanks for stopping by and checking out my blog. (I know you’re really here for the topless pics 😀 – see: My Photos)

I was recently contacted by a reporter who is writing a story about BRCA and hereditary breast and ovarian cancer (HBOC). I was more than happy to share my story, feedback, and reaction to Angelina Jolie’s New York Times op-ed. I thought adding that here is a great way to give the new readers a summary of my story, so here goes …

Recap

I’m 32, married, no kids (more: About Me). Neither I nor any of my family members carry any of the known BRCA mutations; however breast and ovarian cancer are prevalent in our family. My sister was 28 when she was diagnosed with breast cancer and died a year later. My other sister has a breast biopsy scheduled for next week. My mother is currently undergoing treatment for ovarian cancer.

I said NOPE to Breast CancerEven though I am BRCA mutation negative, I have an increased risk of developing both cancers based on my family history and was faced with the same decision regarding my breast health: choose surveillance, chemoprevention, or surgery. For the past 10 years I chose bi-annual screenings via mammograms, ultrasounds, and a few MRIs. I made a different decision and started planning for a prophylactic bilateral mastectomy when screenings discovered some issues (see: But why?) in March and then June of last year. I underwent the mastectomy in January 2013 and am currently going through the breast reconstruction process, which will end with the second surgery (see: We’re getting there) in September. I have consulted with my doctors about having my ovaries removed and will most likely be seriously considering an oophorectomy in about five years.

When I was preparing for my mastectomy, I spent many hours online looking for first-person accounts of the process and following recovery. I wanted to know every little detail related to the options and decisions I had to make: from which doctors to choose, to what type of reconstruction is available, to how to handle insurance coverage complications. I didn’t find many back then, so I started my blog, sharing my story and photos. I write my blog to give women facing HBOC insight into the experience of a prophylactic mastectomy if they choose to undergo one.

The “Jolie mastectomy”

I was immediately very excited when I read Angelina Jolie’s New York Times op-ed. I could relate to her story, as I had undergone my mastectomy just weeks before she had hers. More importantly, her name is known by millions of people around the world and now her story is too. She accomplished with one op-ed what many organizations have been striving to do for years – bring global awareness to BRCA and HBOC.

The essay described her very personal journey and reasons for making the decision she did. I echo her feeling that choosing to have a mastectomy was not easy, but I have no regrets. Although the decision to have surgery was right for me, Jolie, and countless other women, it is not the right decision for every woman and one that shouldn’t be taken lightly or made without research, consulting with experts/doctors, considering alternative options (screening, chemoprevention, holistic approaches, lifestyle changes), and understanding the consequences. I think it’s important to note that Jolie’s experience is unique. She was fortunate enough to have a relatively complication-free recovery, but there are many women who experience severe complications following their mastectomy.

After her op-ed came the multitude of reactions, commentary, articles, blog posts. Many expressed their support of her decision, but others condemned her. Having made the same decision, it was difficult to not take it all personally. What they were saying about her and the choice she made, they were essentially saying about any woman that made the same decision. I have (thankfully) had support and encouragement from those around me.

Then came the pieces referring to BRCA as the “Angie gene” or the procedure as the “Jolie mastectomy.” I do agree with the post I recently reblogged (see: Semantics) – in a way yes, this trivializes other women, their experiences, their struggles. Women (and men) all over the world deal with the realities of carrying a BRCA mutation every day. The decisions, uncertainty, major life changes, and disruption are a huge part of their lives. For some, not a day goes by that BRCA and cancer aren’t on their mind. Most have watched a loved one deal with cancer and worse. Majority don’t have a famous name or a famous face. Some publicly share their stories via articles, blogs, support groups, and other venues. Jolie hasn’t done anything extraordinary. The “Angie gene?” She’s no pioneer. I have nothing against her and reiterate that I’m ecstatic that she decided to share her story, but she made the same decision thousands of women have made before her and will make after her. Hearing someone say “oh, you had the Jolie mastectomy” makes me cringe and smile at the same time. While I’m peeved by the categorization and potential assumption that I chose this option because she did, I understand that this is the only point of reference some people have and welcome the opportunity to talk about HBOC and BRCA.

3/7/14 update: A few things have changed since I wrote this post in June 2013: mom’s treatment was not effective (or rather TOO effective) and she died in November, my sister’s biopsy results were clear, but she is now prepping for an oophorectomy, my September surgery was NOT my last one,

Semantics or why I hate the phrase “Angie’s gene”

Since Angelina Jolie decided to share her story, revealing that she underwent a prophylactic mastectomy and is a carrier of a BRCA1 gene mutation, I have been reading and privately reacting to all of the articles, blog posts, TV clips, radio interviews, and the commentary attached to them. Majority of the pieces are positive, some are negative, some are straight up offensive, some convey plain ignorance, and some are just wrong. I have been jotting down (on a napkin) the things that I wanted to address and planned on doing that on this blog.

Until yesterday … when I came across this blog post by Amber, who writes redd in the cities, It is just brilliant and captures everything (and more) that I wanted to share. Please take a few minutes to read Semantics or why I hate the phrase “Angie’s gene” and stop by Amber’s blog to learn more about her and her story.

Reblogged from redd in the cities:

explicitsemanticsLast week, I decided I wanted a reuben sandwich, and I was missing sauerkraut. Now, for my reubens, not just any sauerkraut will do. Nope, I have to have the best stuff, and there’s only one place I know of that carries it nearby. So I got in my car, strapped myself in, drove to the co-op that carries it and paid an ungodly amount for The Best Sauerkraut In The World. I got home, laid out all my ingredients and started drooling at the prospect of my delicious, most-craved reuben.

And then I couldn’t open the jar.

Why am I telling you this story? Well, it’s simple, really. I couldn’t open the jar because decreased strength in one’s pectoral muscles is a side-effect of breast reconstruction with expanders. This time ten months ago, I couldn’t even have strapped myself into a car, or even driven, for that matter. It’s little things like this that are the reality of life post-op – whether you’re me, or Angelina Jolie, or the thousands of other women who have opted for preventive mastectomy and reconstruction.

As a third-shifter, I am also up at ungodly hours of the night, so imagine my pleasant surprise when a member of my support group posted an op-ed on the New York Times regarding medical choices when faced with a diagnosis of a BRCA mutation. Then imagine my surprise when, halfway down the article, I read the phrase ‘my partner, Brad Pitt’. My eyes flew up to the top of the page and there it was, in that stark gray New York Times text: ‘by Angelina Jolie’.

I didn’t quite know it then, but the next 48 hours would be full of fielding questions, editing personal stories for Young Previvors, and tweetbombing a few of my personal favorite celebrities (sorry, Natalie Morales and Gideon Emery!) It’s only just now that I’ve actually had time to pen a few thoughts about what’s been going on.

Like most of my sistren in my support group, I was simultaneously thrilled by the prospect of an A-list celebrity speaking up and lending awareness to hereditary breast and ovarian cancer and dismayed by the media and public reception of said announcement. But it wasn’t until I read these articles that I started getting really angry.

“I’m 25, and I Have the Angie Gene.”

“I had the Angelina Jolie Mastectomy.”

Wait. What? I mean, all this exposure – great. You know what they say: “No press is bad press.” And while breast cancer is definitely on the radar – one need only take one look at the vomit-pink legions of websites out there to know that – ovarian cancer is sadly not as much, and hereditary exposure to eitheris sadly lacking a lot of coverage.

But when I read headlines like this, I feel like my experience is trivialized. Yes, Angelina had this surgery and yes, she was back to normal not too long after. So was I – I was back to work, in limited fashion, within a couple of weeks – but that is not everyone’s story.

Ladies and gentlemen, preventive mastectomy and reconstruction is not as easy as walking into a surgery center and walking out with a new set of breasts. Let me give you the dirty nasty of it, and this is from a textbook-perfect, no-complications procedure. From start to finish, these are some of the things I had to deal with:

  • People questioning my decision. (to which I would have answered with this Tumblr entry, if it had existed last year)
  • Getting the time off work and having to explain my situation to qualify for FMLA leave – an almost insurmountable task, in and of itself
  • Deciding whether or not I would opt for a bilateral oopherectomy at the same time. I decided not to, but that’s a post for another day.
  • Explaining my decision to every. single. well-meaning. nurse and doctor at the hospital where I had my procedure
  • A two-night stay in hospital over Independence Day weekend, and sharing a hallway with a narcotic-seeking frequent flier
  • Being under the influence of enough painkillers to down a horse for almost a week. One gets so excited about having a week off work until one realizes that entire time will be spent in an opiate haze (and don’t suggest marijuana to me; it’s more than my job’s worth to try!)
  • Two Jackson-Pratt drains underneath my skin and wrapped around the expanders, which had to be drained three times daily. AJ had six. SIX?! I could barely even deal with two.
  • Sleeping on the couch for two weeks, sleeping with five thousand pillows underneath me for three more, and not being able to sleep on my stomach for six months.
  • The feeling of two rock hard pits of saline underneath my pectoralis muscles. Occasionally they would start to migrate toward my armpit, and in the early days, they wibbled and wobbled painfully under my flesh.
  • Fielding well-meaning inquiry by coworkers, friends, and family, which is appreciated, but exhausting
  • Exchange surgery in a day-surgery center. I cried more during my exchange than anything else: the nurses here were cold, rude, and performed their tasks in a way that was so perfunctory it bordered on brutal. I was in constant pain, they didn’t listen to me, and busted a vein in the process.
  • Returning to work only to find out that no, lifting a four-liter jug of water and reaching for racks of samples is not a good idea four days post-op
  • Getting new insurance and having to fight for nipple reconstruction.

It’s not glamorous, it’s not A-list; the above is the nitty-gritty, which is to say nothing – nothing – of what the ladies that call themselves the Complication Nation have to deal with. The worst part is that the articles that offended me so badly are actually well-thought out and well written. However, in a nation of people that read headlines and little else, suddenly I find myself having to explain that yes, everyone has this gene, it’s a mutation in said gene that causes my increased risk of breast cancer, and yes, really, it is not just breast but ovarian cancer, as well, and yes, absolutely I do think Angelina Jolie was brave in coming out in the face of all the public scrutiny she’d receive.

So, let me take the time to remind my readers, however many of you there are, of a few things.

When you are BRCA-positive, you have a lot of very tough decisions to make. The decision to remove my breasts was easy for me, but it can be very hard for others to make. I still struggle with the idea of losing my ovaries and am desperately hoping that the studies on salpingectomy (removing one’s fallopian tubes instead of all the plumbing) pan out.

BRCA mutations have been documented for years and research is ongoingIf you have the resources, I highly suggest donating to the newly-founded Basser Research Center for BRCA, which has ongoing studies in outreach, risk assessment, prevention of hereditary cancer, and treatment

Preventive mastectomy and oopherectomy are not your only options for prevention. Thousands of carriers of BRCA mutations, both female and male (and yes, men can and DO carry BRCA mutations, and it does affect them!) have opted for surveillance options, including semi-annual MRI and mammography, CA125 monitoring, and preventive tamoxifen regimens. If you are not comfortable with the idea of removing your tissue, you do have options.

Because I chose to remove my breasts, I did not opt for self-mutilation. I read this article and absolutely fumed. More accurately, I stormed around the house spewing expletives, none of which are appropriate for the blog, or for public usage. Doubtless some were creative, I’m sure. Let me emphasize this: While clean eating and exercise are always a great idea, for carriers of BRCA mutations, no amount of juicing, raspberry ketones, homeopathic treatment, or chemical avoidance will mitigate the fact that one of your biological pathways is broken.

I suppose that’s probably it. I will step off my soapbox for now, and leave you with some links and resources that may help you sort out this post-NYT babble:

Thanks for reading!

Image provided by Flickr user dullhunk. Used under a Creative Commons license

Nipple delay

Wondering what a nipple delay is? I was too! I hadn’t heard of this procedure until Angelina Jolie announced to the world that she underwent a prophylactic double mastectomy and this procedure was part of the process.

Since that announcement, many different articles and opinions have been published. A lot of them positive, but a few negative. That’s another post for another day. A few pieces did provide more information on the nipple delay procedure.

Breast Reconstruction Guidebook Figure 1.1What is nipple delay?

During the nipple delay procedure, the surgeon makes an incision in the skin and severs the breast tissue and blood vessels directly beneath the nipple (it remains attached to the surrounding skin). Due to this, the nipple is no longer dependent upon the blood supply directly beneath it and becomes accustomed to getting its blood supply through the skin. According to the Pink Lotus Breast Center blog, it actually recruits additional blood flow not previously established.

This is an uncommon procedure. If it is elected, it is performed some time before the mastectomy; two weeks for Angelina Jolie.

Why have a nipple delay?

Surgical nipple delay is used to decrease likelihood of nipple necrosis, which can occur because of loss of blood supply and can lead to nipple loss, following a nipple-sparing mastectomy.

Breast skin is fragile after mastectomy. If it’s exceptionally thin after the breast tissue is cut away or is handled too roughly, it may die. The same result may occur if the breast surgeon severs too many blood vessels that feed the skin or uses eletrocautery too aggressively and burns the inside of the skin, which may then blister and die.
– Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

I was not informed of this option prior to my own nipple-sparing mastectomy. My compromised blood flow resulted in necrosis on my left breast and I lost a nipple. If you are interested in reading about my bout with necrosis (including photos) and the hyperbaric treatment I underwent in an effort to thwart it, please read Tissue necrosis.

Related articles:

Source of Figure 1.1: Steligo, Kathy. Breast Reconstruction Guidebook: Issues and Answers from Research to Recovery. Maryland: The Johns Hopkins University Press, 2012. Print, third edition.

Angelina Jolie: I decided to be proactive

AngelinaJolieThe HBOC community is buzzing today. I’m sure you’ve already heard the news: Angelina Jolie underwent a prophylactic bilateral mastectomy in February ’13. She also revealed that she carries a mutated BRCA1 gene in an op-ed piece she wrote for the New York Times.

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made.

For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices. – Angelina Jolie

I’m very thankful and excited that she has decided to share her story. Along with Sharon Osbourne, Allyn Rose, Giuliana Rancic, Christina Applegate, Sheryl Crow, and other women in the limelight, she is using her platform to educate and bring awareness to hereditary breast and ovarian cancer. The story was the main feature on the CNN.com website the day the op-ed piece was published!

Just like me, Angelina Jolie had a nipple-sparing double mastectomy and chose the expander/implant route for breast reconstruction. She first had a nipple delay procedure, which is an extra step done two weeks prior to the mastectomy (see: Nipple delay). She had an inframammary fold incision, allograft, and a whopping six (!!!) drains post-op. The Pink Lotus Breast Center, where Angelina Jolie had her PMB, has posted more details of her journey. Read their great blog post.

Related articles: