Tag Archive | genetic testing

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.

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…it’s time

[Today’s guest blogger is no stranger to The SCAR Blog. When Facebook removed some of the SCAR images this time last year, Sara wrote an open letter to Mark Zuckerberg on her BLOG which I cross-posted here, with her permission. When quite a few of the SCAR girls were making preparations to head south for The SCAR BAMA exhibition, Sara wrote about it on her blog and once again I snagged it for reprint HERE (again, with her permission) because the SCAR sisterhood, which her article provides a lovely glimpse into, is one of the many beautiful things that has evolved from David Jay’s The SCAR Project Exhibit that many might be unaware of. When Sara got back from The SCAR BAMA exhibition, she wrote a beautiful recap on her blog, which of course also landed HERE, because she’s a generous soul like that, not to mention a dear friend. At which point I played both those cards in the latter part of the previous sentence and told her I thought with 3 SCAR blogs under her belt it was probs time for her to share her story. Of course, she did. And here it is. Thank you, Sara, love!]

by Sara Bartosiewicz-Hamilton

12/12/12…I call it my lucky day…the day my life started over. I had no idea how true this would be. Leading up to the 12th day of the 12th month of the 12th year, I was filled with anxiety, ready to have it over…at the same time, I wondered if I was sure. I kept telling myself, if ever I think I’m not ready, I’ll pull the plug…I still showed up. I started tearing up as the nurse prepped me for the surgery. She asked if I was okay.Yeah. She asked if I was sure I wanted to do this. Yeah. She said, it doesn’t make it any easier, does it? And that’s exactly what it was…I knew in my heart and my head it needed to be done…but knowing it, believing it, didn’t make it easier. Much like the beginning of this journey.

I was tested for a gene mutation in the fall of 2006. I knew I had a 50/50 chance of having the mutation…my spirit was prepared to hear I was positive. And I was. I was told I had the BRCA2 mutation and, through tears, I responded by asking the genetic counselor to set me up with what came next. She was confused. I was only 29, surely I could wait, surely I didn’t need to do anything until I was 40. Genetic testing was not new but it was not common yet either…I was the youngest person she had tested. I knew what I needed to do. I wanted to have a mastectomy. Take out the tissue that had an 85% chance of turning on me. Get it out, let me live my life. Let me give up this fear.

Fear. Our family tree of cancer explains my fear. In my mind, it was a matter of when, never a matter of if. I was surprised by some of the backlash I received from my choice to have a prophylactic mastectomy. I was naive. I was young. I didn’t realize there was a lot of fear behind that anger…sometimes, guilt. I couldn’t handle it so I shut myself away. I tried to find someone, anyone on the internet. My oncological surgeon told me she knew there were other young women choosing to have PBMs…I just couldn’t find any. I was isolated. Friends closest to me told me I shouldn’t do it if I couldn’t be happy. Happy? Was that what I was supposed to feel? I wasn’t sure what I was supposed to be happy about. This wasn’t a boob job. This was the removal of my body parts…my tissue ripped out of my body. And replaced…a plastic mound shoved under my muscle. A plastic mound that would grow over time as I was injected with more fluid, that would continue shoving my muscle around. And all of this to evade cancer…that may eventually come for me anyways.

Sara (29) and her daughter (2) two weeks after her preventative bilateral mastectomy

Sara (29) and her daughter Ms P one week after her prophylactic bilateral mastectomy in Jan. 20007

A girl found me on MySpace. She was the one who told me about the SCAR Project and she asked if I wanted to meet her and a couple other girls in NYC to be photographed. I looked up the website and was speechless. I was looking at young women…I was looking at me. I immediately reached out to David Jay:

David~ I would like to be involved…I have never had breast cancer but have the BRCA2 gene (mutation).  I had a prophylactic mastectomy at 29 because the gene (mutation) gave me an 85% chance of getting breast cancer.  I understand your project is for women who have fought breast cancer but I thought I would volunteer in case you could use me as well.  Regardless, I look forward to seeing the finished project.  When I was getting ready for my surgery, I was desperately searching for what I would look like afterwords.  I couldn’t find pictures of young women…this is powerful.  Thank you.”

I was so excited (and terrified at the same time) when David wrote back and asked me to come. I wanted to participate because I wanted there to be a photo. I wanted the next 29 year old to be able to find my photo and be able to find the courage to have a PBM…to know she was going to be okay. I was terrified because I was going to be photographed. Because there would be a photo of me…there was going to be a photograph of my scars. There was going to be a photograph documenting myimperfection…

It didn’t help when I received an email that it may be best to wait. When I asked why, I was told he was receiving emails and he wasn’t sure what to think. I was devastated. And then I was enraged. I received a copy of the email because my sister went to bat for me and was sent a copy of the email:

Please re consider the shooting of Sara… She is Not appropriate for this project. she NEVER Had cancer. She only took off her breasts as prevention!!! Everyone in her friend circle and family knows that she is not stable to do this!!!! She does things like this for attention. Who??? Has a DOUBLE MASTECTOMY at age 30 when NO cancer is present??? Someone who is not STABLE. Her mother has NEVER had cancer. Her GRANDMOTHER has NEVER had cancer. This is not the same as your other candidates. PLEASE DO NOT encourage her behavior… Now. I say this with love but as you can understand MANY of us are tired of her charades. And having her half naked in a magazine for us all to explain to people who are AWARE that she NEVER had cancer in the first place. It makes a mockery of those women who have actually almost lost their lives.”

It was obvious to me this was not someone closest to me – my grandma did, in fact, have cancer, she had died of cancer. On the flip side, to be honest, I think it hurt so much because I wondered myself. Am I the only one who goes through a double mastectomy at 29 (ahem, NOT 30) without there being cancer present? As I tried to explain the untruth throughout the email, I expressed that I had been wrestling with guilt. Guilt that my choice was done out of fear…guilt that I was a sissy because I was too afraid to get cancer.

When I finally made it out to NYC, I had a lot on my mind. I had also received emails from this same person spewing ugly things. At that time in my life, I was unable to recognize that sometimes people are ugly because of what is inside of them…and it has nothing to do with me. I was unable to detach from their words, unable not to internalize them. While it didn’t stop me from going, it made me pause. Was I doing the right thing? I was the last girl to be shot that day. I arrived after everyone was done being photographed (read: dressed). I sat down and had my make-up and hair done and then it was time. The point at which I was taking off my shirt, it seemed like a really crazy idea. Other than my doctors, my hubby was the only one who had seen the scars and he saw them with the security of a dark room and, even then, I did what I could to hide them. I was asked beforehand to bring something that had meaning or relevance to my shoot. I brought a charm with a picture of my littles on it and I also brought a photo of my mom and two of her sisters. I had something which explained without words the reason for my prophylactic bilateral mastectomy and I had something to explain why I would choose this. David went with the photo of my mom and two of her sisters. I’m so thankful he did – for all of time, my photo explains the family ties and the multiple generations our mutation has affected.

Sara’s SCAR Portrait taken in Dec. 2007, about a year after her PBM

Something happened at my photo shoot. Something I was not even aware of yet. I found a place where I belonged. A place of acceptance. A place of understanding. A place of love. I am forever thankful for my first SCAR sisters. They helped me embrace that my story was valid…they helped me see I was accepted into their “club” without having cancer. They helped pull me back on my feet when I didn’t even realize I was floundering. And they helped me grow taller that day. They were impressed by my courage and strength. I didn’t believe them quite yet but I held onto them, hoping they were right.

Fast forward a few years. It seemed surreal as I sat across from someone I called my best friend and heard similar words of ugliness being flung at me. Ironically, it was my five year “boobiversary” – five years after my mastectomy and I was being assaulted with words. Self-mutilator. In need of a therapist, not a surgeon. I had just disclosed I was planning on removing my implants. It was something I had been quietly considering for a while. I had not talked about it with many people: hubby, my plastic surgeon and with one of my SCAR sisters at the Cincinnati exhibit. I was having daily discomfort and pain and was hopeful that having my implants extracted would help relieve this. I was at the point of being ready to schedule the surgery and wanted the moral support of my friend…my “best” friend. I was caught off guard. The me who showed up for my PBM would have allowed this assault to continue until completion…the me who spent the past couple years embracing my new reality was strong enough to say stop…strong enough to walk away. Unfortunately, not before internalizing some of the accusations. I delayed my extraction for another year. I lived with the discomfort and pain as I searched my soul. I couldn’t deny what I was feeling but was I sure having my implants removed was the right choice?

I was back in Cincinnati when I had the courage to say it was time. I came home and the first conversation hubby and I had was that I wanted to schedule the extraction. It seemed like more than coincidence, perhaps a sign from the universe, when I was opening the mail immediately after our conversation and I opened lab results from my doctor confirming an autoimmune disease. When I had my pre-surgery appointment with my plastic surgeon, it was both amusing and sad to hear my plastic surgeon ask me what had taken so long. He told me he could tell this was the right choice for me…over a year before.

Fast forward to 12/12/12. My life truly did start over. When I woke up from surgery, the discomfort was gone. As my body healed, so did my spirit. I noticed I started looking at myself in the mirror without the little black box to censor what I was seeing. I realized I was the most comfortable I had been in my own body since my mastectomy. I found myself forgetting about the extraction and am no longer reminded daily of my surgeries, my BRCA mutation, or my lingering fear cancer will find me. Life started over, no longer hindered by the past.

I have been incredibly blessed – I always had someone in my corner. And, as my journey progressed, that corner became fuller and fuller. I choose to include the pain and judgment of the past because it is, unfortunately, what many women in my shoes continue to hear. However, while those hurtful words have no power over me, they give me the ability to reach out to someone else and say, I understand. I heard that too. I am hopeful that sharing will also help those who would place judgment to step back and recognize, it’s okay if you would never make the choices I made but it doesn’t give you the right to try to say you could live my life better than me. When I look back, I remember vividly the isolation I felt before my prophylactic mastectomy and again, feeling in the extreme minority as I was considering my extraction. I don’t ever want any woman to be completely alone. I recently started a Facebook group with my fellow SCAR sister Barbie – it’s called Flat & Fabulous. We are actively on the hunt for our fellow sisters who have had a mastectomy and, for one reason or another, do not have reconstruction. It has been both validating and heart breaking as I get emails from a stranger telling me she never knew there was someone else like her. Our page offers support, encouragement, and LOTS of laugh as we all go forward with living our new reality.

I recently wrote about The SCAR Project Exhibition in Birmingham and Joules texted me to ask if I would share my article here on The SCAR Project blog. About five minutes after she told me it was up and asked me to proof it, I received another text that said now that I’d written for the blog THREE times, but had yet to share my own SCAR story… “it’s time.

So, this is my story. It spans over my lifetime. It starts at my mastectomy. And again at my extraction. I am incredibly thankful for the lessons I’ve learned along the way about love, friendships, life, and what is truly important. Trying my best to Live Sincerely.every.single.day.

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Sara’s Live Sincerely Photo (taken with her family last summer) for The Live Sincerely Project