Tag Archive | prophylactic mastectomy

Angelina Goes Lara Croft On Cancer

Angelina Tomb Raider

[Angelina Jolie took tomb-raiding to a whole new level in her op-ed piece in yesterday’s NY Times. In the article, the actress/humanitarian/wife/mother/and not-just-in-the-movies-an-ass-kicking-superhero-of-a-woman, shared her own absolute reality of confronting the shit out of  breast cancer—before cancer could even think of drawing its pistol out of its holster. She revealed she has the breast cancer gene and has taken decisive action against the BRCA1 mutation she inherited, by way of a recent prophylactic bilateral mastectomy. Reducing her risk of getting breast cancer from 87% to under 5% seems like a no-brainer. It also seems a little barbaric that in this day and age the best we have to offer in the way of a cure/prevention is amputation. Bravo, Namaste, Cheers to Jolie’s health, and props to her, not only for the extreme courage in making such a difficult choice, but also in sharing her story with the world. Her willingness to use her superstar status to increase awareness will save lives. Literally, raid tombs. Collaterally, Jolie’s article, which has gone viral, is bringing much-needed attention to some of the struggles carriers of the BRCA1 and BRCA2 gene face. In today’s guest post, SCAR Girl Sara “Bartowski” Hamilton, who has written HERE about her own struggles as a Pre-vivor, weighs in on the discussion.]

Guest Post by SCAR Girl Sara “Bartowski” Hamilton

I am incredibly thankful to Angelina Jolie. It has been six years since my own prophylactic mastectomy and every time I am sure we have finally made it over the hurdle, I become aware we still have so far to go. And every time someone famous uses their platform to raise awareness and educate the masses, they help us make progress. Because Angelina chose to share her story, more families will hear about the possibility of a genetic component behind family members dying of cancer. They may choose to seek out genetic counseling. They may start communicating about a topic that is very painful. Angelina Jolie talks about her beloved mother and the pain she has that some of her children will never know their grandmother. My mom carries the same pain – my sisters and I only know our Nona through photos and stories. Talking about what is tearing families apart can be difficult but maybe Angelina’s story will help people find courage to talk about the possibility of a genetic component. And having the knowledge of a genetic mutation will help people be able to make choices fully armed with the current research and knowledge we have available.

True to her humanitarian nature, Angelina openly discussed the costs of genetic testing. Let’s be real, for Angelina, this is a drop in her bucket but she understands those costs are going to be prohibitive to others. Immediately my mind went to the case before the Supreme Court and their upcoming ruling on whether or not Myriad will be able to hold a patent on our genes. The reason our testing is so expensive and, therefore, often not possible for those who don’t have thousands sitting in their bank account is because Myriad currently holds a patent. This patent has allowed them to keep the price high when, in fact, the testing should at most cost a couple hundred dollars.

Not surprisingly, I also immediately saw comments from those who show up to judge the choices Angelina has made. Having dealt with harsh judgment throughout my own journey from prophylactic bilateral mastectomy with construction to my recent “deconstruction”, the critics struck a sensitive chord that I feel I’m particularly qualified to address. I wish the critics recognize these choices are not entered into lightly and without heavy consideration. Understandably, this upsets some of my BRCA sisters. It is difficult to make such a life altering decision and then have a mob of cruel critics tell you that you were being drastic or rash. I encourage my BRCA sisters to take these judgments as evidence of the work we still have to do; we obviously have many people who still need to be educated. But don’t take it personally. Stand strong in the reasons you made the choices you made and let your story continue to be told to help those who come behind. Let it also continue driving us to actively embrace that we all have choices and we must reach out our hands to support each other in these choices. The choice to be tested, the choice of surveillance, the choice of prophylactic surgeries, the choice of reconstruction, the choice of being flat*. And every choice is valid. None of our choices are easy but we all make the choices that we feel are best for us in that moment. And I am a perfect example that sometimes our choices will change…and that is okay too.

Later this morning, Brad Pitt showed up for some mad love. He publicly commented on Angelina’s choices and said:

Having witnessed this decision firsthand, I find Angie’s choice, as well as so many others like her, absolutely heroic…All I want for is for her to have a long and healthy life, with myself and our children. This is a happy day for our family. 

Maybe for some people it would seem strange that we applaud Brad for making this statement. However, I have talked to the women who decide not to go forward with a prophylactic mastectomy because their partner is not supportive. I have talked to women who are single who and terrified their decision will impact their ability to find a partner. In my own journey, I remember the very real fear and wondering if my husband would find me less than…and again when I was facing extraction I thought surely my hubby would never be able to look at me, touch me again. I love that Brad has spoken because he has given a voice to the men I know – my hubby, the husbands of some of my SCAR sisters – he has shown there are men who find the worth and beauty of a woman in more than her breast tissue. He embraces and admires Angelina’s choices and that is what should be and yet is often overlooked in our stories. I am incredibly proud of the men I know who embrace the choices of their partner and support them any way they can and I am thankful their story has a small piece of the spotlight today as well.

The fact remains, there is NO cure for breast cancer. It kills thousands every year. Genetic cancer, we are told, comes earlier and more aggressively. We also are told that we are at higher risk for recurrence. I pray every day a cure will be found…for my children, for my friends. We can all help get a little closer by not buying into the pink washing of our society – spend time reading about The SCAR ProjectBright PinkFORCE. Do some hard research about where your donations are going and make educated choices on where you want your money spent. And start raising your voice with us as we scream for a cure.

Much love  to you, Angelina Jolie. I wish you did not have to join our sisterhood but I applaud you, one of our newest sisters, for raising your voice and telling the world your story.

*Sara and fellow SCAR girl Barbie Ritzco have founded a Flat AND Fabulous awareness group on Facebook, and a Flat AND Fabulous support group page as well, for those living the Flat AND Fabulous lifestyle.

The Girl With the Red Hair and a Tear – a guest post

[When I produced The SCAR Project Cincinnati exhibition, so many people came up to me in tears, telling me how much the SCAR portrait of “the girl with the red hair and a tear” moved them. Getting to know Sarah and many of the SCAR girls (as many of them call themselves) this past year as I’ve begun coordinating exhibitions and consulting with those trying to bring The SCAR Project to their cities/countries, has been one of the most beautiful things in my life. It is my great honor and pleasure to introduce you to “the girl with the red hair and a tear.” Obviously her portrait wrote the book on the whole picture being worth a 1000 words. But here are a few of the words behind her SCAR portrait. Her own words: my friend, survivor sister, SCAR girl, and guest blogger, Sarah.]

Image

“It looked . . . ” my surgeon twisted her face and looked towards the ceiling, searching for words to describe it. “Well . . . it looked like a flower.”

I don’t know if that made the news more, or less, disturbing.

The growth, blossoming in the ducts of my right breast, could be compared to something beautiful.

I don’t know why this was first question that fell out of my mouth when my doctor told me I had cancer but – before my brain could wrap itself around that word – I needed to know what this thing looked like. What was I battling? Getting a vision of something usually provides some context. Instead, I only got an image of clubbing some innocent peonies. This really wasn’t going to be much good, in terms of gearing up for a fight.

This was the beginning of nine months where cancer consumed my life. I know that I am lucky that it didn’t take more. Though I was diagnosed DCIS (ductile carcinoma in situ) and staged at zero, the cancer was all over the place like weeds in an untended garden plot.

Not one doctor could tell me what causes breast cancer in a fit, otherwise healthy 28-year-old, or what causes it to be so aggressive in younger women – in my case filling up the ducts and heading for my chest wall. After three excisions, and an argument between my radiologist and her MRI technicians, they continued to find more cancer, through three quadrants of my right breast.

Each new discovery gave me less time to make decisions, but I knew a mastectomy made the most sense.

All of my doctors were women and each one felt like some strange mother figure that was going to take action to make everything better. My reflex to this maternal agitation was to beg for more time. I also wanted to see more than one plastic surgeon about handling my reconstruction to figure out what my options were.

The first doctor I saw entered my exam room with a small cadre of un-introduced interns. I had a list of questions, all related to different reconstruction methods. He gathered some of my fleshy stomach between his fingers, examined my exposed breasts, and simply stated that there wasn’t enough there to reconstruct even one breast to it’s current size. But maybe with the addition of an implant?

The waiting room of another doctor contained a bowl of chocolates bearing the office logo. I snuck a few into my pocket before my partner and I were ushered into an exam room that looked more like an upscale hotel room. We were met shortly by a youngish looking doctor. Slick, attractive, but warm and kind. He didn’t take my insurance. We weighed options and ate chocolates as we rode the elevator back down to the ground floor.

The reconstruction surgeon I chose came recommended by a friend. She only did medically necessary breast surgery and she also worked on hands. She had a southern drawl. She spoke to me, not at me. She included my partner in the discussion since I had seen fit to bring her there. I told her that I didn’t necessarily need to have the whole breast removed, but I was afraid not to. When I eventually decided to remove my healthy breast as well, she said that she would do the same thing. I knew I was in the right hands.

Frightened, for my health, longevity, and lack of symmetry, my left breast was removed prophylactically less than six months after the cancerous right one. To get rid of the cancer, even between the discovery of DCIS in locations that weren’t originally identified, and a scare that resulted in a PET scan and a bone scan, it only took nine months. The reconstruction took far longer to be finalized, well over a year, and this is without the addition of the best approximation of nipples that money can buy.

I did it because wanted to look like myself. I wanted to fit into my clothes. I wanted cleavage. Why not? I had it before. I’ve had breasts since I was twelve years old, and it was my body, damn it. It had taken me 28 years to get comfortable in this skin. And now? Now I was angry that the most rational decision I could make led me to want as little change as possible.

Later, after the cancer was gone, after I looked normal in clothing, I went into a six-month funk. I would never truly look normal. Changing at the gym sent me into a cold sweat. Buying bras was a nightmare. Forget about looking sexy when I had lost all feeling at the surgery site.

I know those are superficial concerns, but still they are very real. I don’t have children yet. Can I have them? And without the cancer returning despite my best efforts? And surely if I was so blessed to give birth the first person to tell me “breast was best” would be met with a fist to the jaw, I’m certain, before I even realized what was happening. And my partner, should she choose it, would be stuck with this body, these alien protrusions from my chest for the rest of her life. It was not life or death, but it was a kind of suffering that made me, and on a bad day still makes me, burst into tears on a whim.

The SCAR Project shows this less than pretty pink-ribboned side of breast cancer. It reveals the new reality young women face, having confronted breast cancer. They look at you from their portraits as is . . . reconstructed or not . . . alive, giving the big “fuck you” to cancer, but scarred. Some have even used the word “butchered” to describe me and the other women in the photos.

The SCAR Project photos give voice to the suffering that is done in silence. Every cancer patient is applauded for staying positive, but sometimes that is too big a burden to bear. There is a real-ness in these photos, as the camera captures milliseconds of a long, multi-round fight. There is room to breathe, to expand the excised chest – because for a few moments it is only you, and that camera, and the memory of where you’ve been and what lies ahead.

Breast Cancer: Absolutely Inappropriate.

[As Facebook has deemed some images of The SCAR Project to be inappropriate, and as such, has consequently removed them from the The SCAR Project FB page, one of The SCAR Project girls has written an open letter to Mark Zuckerberg on her blog. With her permission, I’m cross-posting it here, featuring Sara as my first guest blogger on The SCAR Project Blog.]

An open letter to Mark Zuckerberg

Dearest Mark & FB moderators~I am writing to you about the SCAR Project – the SCAR Project and its images have been featured in LIFE, Forbes, Psychology Today, Wall Street Journal, Huffington Post, America Online, Lancet, etc, and seeks to put a face on breast cancer, especially the young women who are affected by the disease.I am speaking as someone who modeled for the photographer, David Jay. I did so in December of 2007 – before the world knew about the SCAR Project. David used boards targeted to young survivors to ask women to come pose for the project. My reason for posing was simple – I never wanted another woman who was facing a mastectomy to wonder…wonder what she would look like, wonder if she would still be herself…wonder if she would survive. I had a prophylactic mastectomy in January of 2007 and I searched high and low on the internet and could find NO photographs of what I could expect. Everything I found was geared toward older women…no one looked like me…and I was terrified…

Never in my wildest dreams did I imagine the SCAR Project would reach so many women. Never in my wildest dreams did I imagine it would become a GLOBAL influence. There have been a plethora of articles written – all over the world. This project is changing lives…it is empowering other breast cancer survivors…other people who have had their lives changed by breast cancer…it is allowing the generations who had to suffer in silence stand-up and say, that is me…that was my mother…that was my grandmother. I often have tears welling up when I read the comments of the women who are appreciative to FINALLY see someone else like them…who say the photographs gave them the strength, peace, comfort… I am overwhelmed because my hope has been realized tenfold.

How did this project gain momentum? I have to believe it is in large part because of Facebook. The first exhibition was in NYC in 2010 – at that time, I remember the Facebook page followers numbered in the four figures. Today, as I am typing, the SCAR Project’s page has over 22K followers.

I am writing to ask you to please step in – the SCAR Project has received multiple warnings about content. At this point, the photographer, David Jay, has decided to remove the photographs rather than risk the page being shut down. I truly believe, Mark, you must know someone who has been affected by breast cancer. I believe the days of anyone not knowing someone changed by breast cancer are long gone. Think of the person you know, maybe it is a relative, maybe a friend – consider how it must feel – having to cut off a body part, a body part society tells us is the most important part of being a woman. Imagine the isolation, the fear, the grief, the anger…all of these emotions and feeling as if you are all alone. The SCAR Project has changed this – the SCAR Project has allowed these women to see their strength, to find their beauty in this strength. In order for the SCAR Project to continue helping these women, the photographs need to be available.

Facebook has the opportunity to help change the world in a positive way – by allowing the SCAR Project to have an open forum to continue reaching men and women around the world. Please, take a moment to look the SCAR Project’s Facebook page – read the comments. There is no denying the power and impact it is having on the many who view the photographs. Take a look at the SCAR Project’s website to see the actual photographs – there is nothing sexual. It is simply showing the world that breast cancer is, and always has been, so much more than a pink ribbon.

Thank you for your time and consideration~
Sara

The SCAR Project FB Page
The SCAR Project Website