My grandmother, my younger sisters and myself in 2001.
As it turns out, I carry a dangerous mutation in my BRCA1 gene, which is primarily responsible for suppressing tumors in breasts and ovaries. Basically, my power tool for fighting off breast and ovarian cancer is severely defected. This is why women in my shoes carry a lifetime risk of about 85% for breast cancer and 54% for ovarian cancer, which happens to be the deadliest and hardest to catch of all cancers in women. Even worse, women with a mutation in their BRCA1 or BRCA2 genes are more likely to develop these cancers before menopause. To put all of this into perspective, the general female population has a 13% lifetime risk of breast cancer and 1.5% risk of ovarian cancer.
Needless to say, these are some big, scary numbers! But I have to be honest. The thought of living my life unaware of such a risk is even more terrifying to me. That is why, at 21 years old, I decided to go forth with the genetic testing.
My paternal grandmother, Martha, tested positive for the mutation in 2007, shortly before succumbing to ovarian cancer. She developed breast cancer at the age of 60, which is considered to be pretty late for someone with a BRCA1/2 mutation. After a lumpectomy, she was cancer-free until, 6 months later, she was diagnosed with stage four ovarian cancer. We thought that was it. But by the grace of God, my grandmother miraculously survived. That is, until it relapsed, over and over again. After the fifth relapse, the cancer spread to her brain, and we finally realized that this was the end. There was nothing my family could do but watch the cancer spread throughout her body until this beautiful, inspirational woman took her last breath on a Sunday in June 2007 at the age of 71.
What saddens me the most is to think about all the years she lost and all that she could have done in that time had she known sooner about her BRCA1 mutation. My grandmother could have seen me graduate from college last year. She could have seen my middle sister, Josephine, finish high school this spring. She could have seen my dad teach his first college course this summer. The science to save her life was available years before her first diagnosis, but she didn’t know, and now it’s too late. We miss her so much.
My grandmother, Martha Gilmore, in 2005.
My grandmother’s parting gift to us was the knowledge of her BRCA1 mutation. She hesitated to test at first, because she didn’t want to think of passing this down to her children and grandchildren. But my grandmother quickly realized that knowledge is power, and this science could spare her family from all the pain and suffering she endured.
Sure enough, my dad tested positive for the BRCA1 mutation in November 2007, and I learned of my defected BRCA1 gene in August 2008. I have two younger sisters, Josephine (18) and Alice (15). They’ll test if and when they feel comfortable.
At first, my greatest fear was loosing my breasts. Experts recommend that women with mutated BRCA1 or BRCA2 genes have annual mammograms and MRIs beginning at 25 followed by a preventive (aka prophylactic) double mastectomy at 35 and an oophorectomy at 40. I was willing to do anything it took to avoid the end my grandmother met. If that meant eventually removing my breasts and my ovaries then that’s what I would have to do, but I was nervous. Terrified at times.
My mother tried to reassure me. She kept telling me that my breasts would look absolutely incredible. But I could not understand what she was talking about! In my mind, a mastectomy meant removing your breasts all together with no reconstruction except for stuffing in bras. This thought was more paralyzing than the thought of cancer. In the meantime, I would just pretend like none of this ever happened, that I actually was immortal at 21 and nothing bad would ever happen to me.
Then I saw the documentary In the Family, and it literally changed my life. At one point in the film a woman reveals her reconstructed breasts to the filmmaker, Joanna Rudnick, who is trying to decide whether or not to go through with the surgery since she is already in her mid-30s. It was the first time I had seen the kind of mastectomy my mother had talked about all along. This woman’s breasts looked so beautiful, it moved me to tears. While she lost sensation, she had new breasts that would forever be perfect and cancer-free.
Basically, doctors are now able to remove all breast tissue and replace it with implants or other body fat. You can keep your skin, because that’s not what causes breast cancer. But everything inside has to go. That is why women loose sensation. Breast feeding is also out of the question, especially since the nipple also contains breast tissue and is oftentimes also removed and reconstructed. Doctors can take a sample of skin from above your hip bone and expand and tattoo it so you have new nipples that don’t carry the risk of breast cancer. Although several women choose to have “nipple-sparring” mastectomies where doctors simply remove all the tissue inside the breast but leave a woman’s nipples intact.
I was told I could wait until 35, but I really wanted to have my mastectomy and reconstruction done sooner. While it is rare that women with a BRCA1 or BRCA2 gene would develop breast cancer at my age, one of my dear friends was diagnosed at 23. This is definitely unsettling, not going to lie. I’ve changed my diet and exercise regiment in order reduce my risk little by little, but I have grown anxious to do something bigger to annihilate any chance of this cancer becoming apart of my life as it did for my grandmother.
Experts have told me to make a decision not to make a decision. Research is being done everyday and there’s no telling where the science might be in the next few years. Hopefully this will mean that, should my sisters test positive, then they may not need to go through with any preventative surgery. But, for me, I have trouble just living my life with this hanging over my head. Doctors tell me not to worry, but that’s really easier said than done. Every time I do a self breast exam, I constantly wonder if I’m feeling a lump or breast duct. How am I to know?
Furthermore, since I’m high-risk, doctors are going to want to biopsy anything they find when I go in for mammograms and MRIs, which are in order every year once I turn 25. One of my girlfriends had her first MRI recently at 25, and it showed several cysts, which had to be biopsied. She described in detail the procedure to me, and I cannot imagine anything more painful. Thankfully, the biopsy showed that the cysts were not cancerous, but this was the first of many more MRIs my friend will need to have until she, too, decides to beat cancer to the chase with a mastectomy.
The one thing that many young women, like myself and my girlfriend, struggle with is the fact that we will not be able to breast feed if we decide to go ahead with a prophylactic mastectomy. My girlfriend wants to wait until she has children, and I had wanted to do the same for a long time. After all, what else are our breasts really for? For me, I hope I’ll immediately have an intimate connection with my children regardless of breastfeeding, but I want them to have the irreplaceable nutrition of breast milk. Although I’ve told my friends and sisters that if they happen to have children around the same time as myself then I’m stealing their milk. It’s just going to happen.
For many of us, we’re still dating, which further complicates matters. We don’t have the security of strong marriage and a man who will forever love us no matter what. Instead, we are left to tackle these difficult decisions as single women. Will men find our breasts desirable after surgery? Will they admire the courage it took to defy our destiny and have a fair chance at life?
Left to right: Josephine, Alice, myself.
Then I met a young woman last weekend who provided me with some answers to these questions. She is 22 years old and had the prophylactic mastectomy last year at 21. Every morning she looks in the mirror and could not be happier with her new breasts. In fact, she was an A cup beforehand and is now a tasteful, beautiful C cup! More importantly, my friend will never get breast cancer. Sure, there’s a slight risk of less than 1%, but she no longer has that daunting 85% risk hanging over her head every day. She is so at ease, and it shows in the way she talks and walks and carries on with her life as a young woman with a full life ahead of her.
We had lunch, she shared her story, and then I just couldn’t handle it any longer. I had to see her breasts!! She eagerly obliged and led me downstairs to the bathroom at the restaurant. We waited in line for a few minutes with other women while my friend and I talked about plastic surgeons and the recovery period from reconstruction. Then suddenly the bathroom became available and the two of us walked in, closed the door, and giggled a little at the reaction of the men and women waiting in the hallway. Without saying anything, she immediately took off her sweater, then her tank top, and there, in front of me, were the most beautiful breasts I had ever seen.
Tears came to my eyes, because I knew at that moment that everything is truly going to be okay. Here was my contemporary, happy as can be with her new breasts. Even though she doesn’t have new nipples yet, the shape and feel of her breasts were better than normal! They’re the perfect amount of perky.
It was at this moment that I knew I wanted to have this surgery now. If my friend could do it then there’s no reason why I can’t, too. In fact, she’s still dating and has found that men are very supportive of her decision. She also raised a good point: it’s a great way to weed out the deuschbags right off the bat! If they can’t handle the fact that she was proactive about her health then too bad, she says.
She’s inspired me to push forward, begin researching, schedule consultations with surgeons, and make this happen! I plan to have my surgery around Christmas, when I will have a little more time off of work. I’ve already arranged to fly back home to Los Angeles in September for a photo shoot to document my current form as a personal keepsake. My dear friend and old photography teacher has agreed to do the shoot. I know it’s going to be an emotional experience, but I can’t imagine doing it with anyone other than Jen. I’ll be blogging more about this later, too!
While I’m feeling very confident and excited about my mastectomy, I know that there will be times when I’m feeling overwhelmed and scared. I intend to keep everyone fully informed along this journey of mine. Stay tuned.
Mike O.
September 3, 2010 at 2:51 amClaudia,
Just want to say that I think you’re doing an awesome thing by taking control of your life and the challenges it has thrown at you. I second your hope that other women will gain support and inspiration from your courage, not only to go through this process but to do so openly and publicly. Good luck! I’ll definitely be following along.
Best,
Mike O.
Laurie D.
September 3, 2010 at 2:52 amClaudia,
I am so touched by your courage and strength. I will be praying for you as you go along this journey!
Laurie
Marie
September 3, 2010 at 2:52 amWow, Claudia. You are one of the strongest people I know, and you are the perfect role model for younger girls. I totally support and love you and will keep you in my thoughts. Can’t wait to see you in the summer!
Sarah
September 3, 2010 at 2:52 amClaudia you inspire me! I can’t wait to share your blog with the women in my life.
Mary Gregg
September 3, 2010 at 2:53 amClaudia, you are a sensational and courageous young lady. Your thorough knowledge and inspiration will help save many young women from this disastrous disease.
Francesca
September 3, 2010 at 2:53 amTo my best friend,
I could not be more proud or consider myself luckier. You are an astounding woman and fabulous writer. My love and support will be here for you always. I’m so looking forward to heading down this life path with you, whatever the challenges and successes. Cheers to having the best breasts in the nursing home!
Chelsea
September 3, 2010 at 2:54 amWow, Claudia, you are my hero! I don’t know if I could ever have the strength that you have. I’ll be praying for you throughout all of this!!
Love,
Chelsea
Leisa Hammett
September 3, 2010 at 2:55 amI’d like to subscribe to this if there is a way. I am a friend of your mother’s and saw this on facebook. Your mother is incredible. And, apparently, so are you. Blessings.
Leisa Hammett
September 3, 2010 at 2:55 amI’m back now that I’ve made the time to read your entire post here. I am a divorced single mother of a child with autism. While it’s not the same, after I divorced, I had a moment of panic that anyone would want me given that my child has special needs. The answer to that came quickly. Of course, because you are want-able. Secondly, if a man cannot handle that and love her bc he loves me, then I don’t want him. Seven years later, I am engaged to a wonderful man who loves us both and beyond.
You are a good writer. I wish to reblog the first two graphs and link to this post. That’s how moved I am by this post. It may take me a while, but I’ll be back. Thank you for sharing. Yours is a powerful story, dear.
Claudia Gilmore
September 3, 2010 at 2:56 amThank you, Leisa, for your kind and encouraging note! It is so comforting to know that so many are following my story, cheering me on, as I journey through this emotional and physical transformation. You all are my inspiration 🙂
Matt B.
September 3, 2010 at 2:57 amHey Claudia,
I pretty sure we were in Prof. Powers’ American Environmental History class together last spring. I had no idea that you were going through this; I just clicked on someone’s gchat link and it took me here.
At any rate, I’m inspired by the strength you’ve clearly shown and continue to show. I couldn’t even imagine going through this sort of thing right now.
You’re an awesome and engaging writer, but I guess I already knew that from agenda papers last year! Anyway I really hope everything goes well. I’ll be praying for your good health.
Best,
Matt
Claudia Gilmore
September 3, 2010 at 2:58 amYes, Matt, how are you?? So great to hear from you and so touching that you found and read my story! I hope school is going well – maybe I’ll see you around, as I still live in Georgetown. Again, I can’t thank you for your readership and support. My friends and family are my inspiration, and if my words can affect one life then this journey was entirely worthwhile! Hoya saxa 🙂
Colleen
September 3, 2010 at 2:59 amClaudia,
You are an amazing writer and an educated woman, I can’t imagine young girls with the BRCA mutations not being inspired by your story. I’m proud to know you and to be part of Bright Pink with you! Thanks for sharing your blog with me!!
Claudia Gilmore
September 3, 2010 at 3:00 amThank you, Colleen!! Look forward to seeing you and the other BP girls next weekend! Lots of love, Claudia 🙂
Robin Skinner
September 3, 2010 at 3:01 amHi Claudia,
You don’t know me but, I wanted to write to you and tell you how brave and courageous I think you are. I am Janie’s daughter, Robin. Jerry and my mom shared your story with me. Your strength and courage are an inspiration. I will be following your progress and praying for you along this journey. Hope you and your family have a very Happy Easter!
love,
Robin
Claudia Gilmore
September 3, 2010 at 3:01 amHello Robin,
Thank you so much for your love and support – these are big decisions to be making, but I couldn’t do it alone and am equally inspired by the outpouring of love from family, friends and the community. I’d love to meet you when I’m next in Dallas or should you find yourself in Washington, D.C. Happy Easter!
Lots of love,
Claudia
Teri Smieja
September 3, 2010 at 3:02 amHi there – wanted to welcome you to the wonderful world of blogging. You’ve done a great job with it so far and should feel proud of yourself! I have a long list of brca blogs on my blogroll and I’ve added you to it.
Best of luck to you in your journey!
Your brca sistah,
Teri
Claudia Gilmore
September 3, 2010 at 3:02 amHi, Teri!! Thanks so, so much!! I’m still learning how to use WordPress, so once I discover how to do blogrolls yours will be the first to go up – I love it so much!
xoxoxo, Claudia
Mary Duncan Baer
September 3, 2010 at 3:03 amYour dad and I have been in touch and he showed me your article. What an amazing thing to do, and sharing it with the world is even more incredible, and I wanted to thank you! Breast cancer doesn’t run in my family, but with dad dying from cancer it is always a possibilty that I too will have to deal with something like this in the future, and I hope that I have the courage to speak out about it, and share like you did.
Love and hugs to you and when you come to Atlanta, be sure and let us know, you are always welcome.
Claudia Gilmore
September 3, 2010 at 3:03 amHi, Mary! It’s so, so good to hear from you! I think about your dad a lot, especially when I am in the midst of weighing these big decisions. He was really a grandfather to me, and his fight with cancer was beyond brave. When I think of what cancer can do to people, my grandmother and Stuart are the ones who come to mind for me. Their courageous battles are what move me forward and reassure me that I’m making the right decision. I miss Stuart a whole awful lot. I’ll be sure to let you know should I find my way to Atlanta, and I’d love to hear from you all if you visit Washington, DC! Thank you, Mary, for following my story with me – it means so much!
Maureen Galaviz
September 3, 2010 at 3:04 amClaudia,
It is such a privilege to be able to read about your courageous decision. Thank you for your honesty and sharing this journey with all of us.
Claudia Gilmore
September 3, 2010 at 3:04 amMaureen, thank you for journeying with me! 🙂
Linda Rocco
September 3, 2010 at 3:05 amGood Luck with your surgery. My daughter who is 20 will celebrate her one year anniversary on April 29. She was diagnosed with breast cancer last spring and opted for a double mastectomy. She is nearly finished, just the tattooing is left. You will look beautiful and thank goodness will not have to go through the trauma and treatment that breast cancer requires. I will be thinking good thoughts for you.
Claudia Gilmore
September 3, 2010 at 3:05 amLinda, I’m so touched by your comment. Is your daughter still battling breast cancer? My prayers are with your daughter as she nears the end of her reconstruction. It’s women like your daughter who I keep so close to my heart every single day. Their heroic courage that pushes me forward. Thank you so much for writing. All my love to you and your daughter!!
Jenny
September 3, 2010 at 3:06 amThank you Claudia for your story! I knew your grandmother adn what a courageous wonderful woman she was. My dad died of breat cancer at 61 but I’m not sure if I want to do the BRCA test. There is not any other family history of breast cancer. Hard Choices! Thanks for being a blessing!
jenny
Claudia Gilmore
September 3, 2010 at 3:06 amThank you so much, Jenny! These are certainly some big decisions to chew over. A lot of my friends responded to my genetic test by reassuring me that “at least you know now”. While it’s a great blessing to know, to be able to defy my destiny, it’s also a big burden at times. My friend described it best – most people are born with a castle surrounded by a beautiful, natural moat designed to protect that castle for any foreign invaders, like breast/ovarian cancer. Well, people like myself aren’t born with a moat. I have to build my own. This means changing my lifestyle and even going under the knife. But by the end, because I knew of my risk, I’ll have the best darn looking moat anyone has ever seen! Please feel free to call me or write if you want to talk more about this – I’d love to hear more from you! xoxoxo, Claudia 🙂