Three Months Away and the Media Begins

My surgery is only three months away now. It’s beginning to really sink in, or is it? Do I truly understand what I’ve volunteered myself to do? I find myself clutching my chest more often, feeling for the breast tissue that will soon be sliced up and frozen in a tissue bank. I even had a dream the other night that the doctors found cancer and had to operate immediately, reconstruction had to wait. In my dream, I felt completely unprepared to go under the knife and cried my eyes out. The magnitude of my decision is definitely hitting me.

But at the same time, I wish it could be over with tomorrow, because all of this waiting and anticipation is eating me up! I’ve made my decision, I’ve thought it through, and now I want it done and behind me. I get squeamish thinking about the surgery. I’ve only been under anesthesia once before for a tooth extraction, so the thought of being carved out like a pumpkin gets me feeling nauseous. Maybe I’ll bring my iPod and listen to a motivational “you go, girl!” song as the anesthesia takes me under. I need a good battle cry!

Meanwhile, the preparation is picking up as each day passes on the calendar. In early September, the PREVIVE team and I flew to Los Angeles for my topless photo shoot. On our first day in California, the team suprised me with meeting Shaney Jo from Keep a Breast! This totally cool, inspirational woman started a non-profit to educate girls about breast cancer prevention and awareness primarily through art. Among their projects, Shaney Jo creates breast molds of women before their surgeries so they might remember how their body looked before or after their mastectomies. Then the women paint their molds. One woman, for instance, painted her breast mold as a pinata to represent the physical struggle she endured with cancer but also the many gifts that showered down from that experience.

To my surprise, Shaney Jo brought her materials and made a mold of my own breasts! It was strange to feel her lay the wet strips of plaster across my chest, moving her hands across the hardening layers to shape the mold to my form – a form that is about to change. After my mastectomy, I won’t be able to sense very much touch anymore. I didn’t want to feel sad, I wanted this to be an empowering experience. And it was. But it also felt bittersweet. My grandmother is an artist, and she agreed to paint my mold for me. I’m not sure how I want her to do the job, how my experience can best be expressed. But I want it to be bright and bold.

 

Claudia being interviewed by Previve crew
Later that day, I got to finally meet my Pink Pal, Rebecca Collard, for the first time! Rebecca is one of two PinkPals I’ve mentored through Bright Pink, an organization that specifically supports young women at high risk for breast and ovarian cancer. Like myself, Rebecca also carries the BRCA1 mutation. But we’re handling our risk a little differently. Rebecca really wants children, and she wants to breast feed her babies. Since she’s only 26 years old, Rebecca wants to give herself time to marry the right man for all the right reasons. Motherhood isn’t on her immediate radar. So until that day comes, Rebecca will go in every six months for a mammogram or breast MRI. Once she’s had her children then she’ll feel comfortable having the prophylactic bilateral mastectomy.

I share a little bit of Rebecca’s story to show that there are several different ways to handle breast cancer risk as a young woman. No one way is right or wrong. It is simply up to the woman and what she feels most comfortable doing. Even though I couldn’t be more anxious for the mastectomy at 23 years old, surgery is not a good idea for Rebecca at this point. Instead, exercising regularly and watching her diet carefully is right for my friend. You’ll get to hear more of Rebecca’s unique experience living with the BRCA1 mutation in one of our upcoming webisodes – stay tuned!

Well, now I’m back in Washington, DC! Jen O’Sullivan, my dear friend and photographer, sent me the pictures from my topless photo shoot from the Los Angeles visit. I couldn’t be more pleased with the photographs! They’re absolutely beautiful, intimate and intensely personal. After my surgery, I bet I’ll feel a little differently when I look at these images. Right now I just see all the same old familiarities of my body. I wonder how I’ll feel about these pictures in three, four months. Either way, I’m forever appreciative to Jen and my surrogate parents, Albert and Annaliese from Lunch salon, for making this day so special and the photographs so beautiful!

Previve crew and Claudia
Now that I’ve captured my natural form, I can move on and prepare for the transformation ahead. I joke that I like to think of the breast reconstruction more as a breast renovation!  I  just want them to be as perfect as possible if I’m going through all of this!  I’m pretty sure I definitely want silicon implants once I’m done with the temporary expanders.  My large chested friends have told me to not go too big, while my small chested friends encourage me to live it up and get those D’s they’ve always wanted.  I suppose these decisions can wait until after the mastectomy, once I’m in my “renovation” period.  But I’m giving it more and more thought.

And with it now being breast cancer awareness month, the national media is also giving previvors more attention!  Tonight at 4:40pm CNN will be featuring the recently-released book Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions.  The BRCA community has anxiously awaited the book’s release, as it covers the stories of five courageous women who share the intimacies of their experiences with genetic testing, medical screening/surveillance, and surgery.  The author, Dina Roth Port, also includes the latest research and advice from interviews with over seventy leading medical experts.  Please flip on the television tonight to learn more about this book and the inspirational women behind it!  And, of course, buy yourself a copy

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To say the least, the country is definitely tuning in to the previvor community and the unique issues we face.  CNN will use the 4:40pm time slot every Sunday this month to cover cancer and genetics.  PREVIVE will also be hitting the national airwaves this week!  Monday night, NBC Nightly News is featuring my story, including interviews with my genetic counselor, Beth Peshkin, and my breast surgeon, Dr. Shawna Willey.  And, get this, the TODAY Show is having me up on Thursday morning to share my journey and the PREVIVE project with the nation!

And my 27-year-old previvor friend, Emily, recently shared her story for the first time in Today’s Charlotte Woman!  Click on “this issue” and scroll over to page 29 to read her story.  The article is incredibly well-written and thoroughly presents some of the most important facts and issues surrounding genetic testing and risk management.

It takes a tremendous amount of courage to open up and publicly share your story, just as Emily and the other women of Previvors did.  I’ll never forget the first time I published my experience with genetic testing in my school paper.  At first I thought, “Oh God!! I made a serious, serious mistake! How can I take it back?!”  But one by one college peers and professors approached me to offer their sincere gratitude and support.  They didn’t know about BRCA before reading my article, but now they would share this new knowledge and positive outtake with family and friends.  I could feel my heart smile within to think to think that I sparked dialog that might eventually save another person’s life!

PREVIVE encourages you to share your own story with us!  Whether you’re a man or a woman, previvor or not, we want to hear from those of you who are learning about their health and taking proactive measures to overcome odds and live life more fully!   As I mentioned in another post, I think the greatest gift we can give in this world is inspiration, because it’s the gift that keeps on giving.  And each time I read a new story, I can feel the inspiration and hope tingle throughout my body.  Your courage is contagious, so let’s spread it around!  Please email your stories (and a picture of yourself) to previve@gmail.com.  We’ll be sure to post them on the PREVIVE website for the world to see

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And on that note, I leave you all for now.  This week is a big one for PREVIVE, so I ask you all to keep us in your prayers.  Be sure to watch CNN tonight at 4:40! xoxoxo

35 Responses to “Three Months Away and the Media Begins”

  1. October 4, 2010 at 3:09 am

    Thanks so much Claudia from one of the Previvors featured in the book!
    I know these months before surgery are the most stressful and I applaud you for your decision…please know w are always here to support you!
    five years ago when I had my surgery I leaned on some incredible women who had also shared our journey…it’s important to get the word out so other women facing these difficult decisions can realize they are not alone, and they can get the resources they need to help them through…hopefully with our book “previvors” and your documentary/ film we can accomplish just that

  2. October 4, 2010 at 12:24 pm

    Claudia all I can say is that you are SO lucky to be saving yourself the years and years of worry that I had. Though I didn’t know my BRCA status until I was 43, I knew my mother was diagnosed at 45 and I was high risk. The stress took its toll. BIG time. It aged me. Sitting around waiting for the other shoe to drop was NOT fun.

    I know that right now this whole PBM thing is the center of your universe, but what’s funny is that you are about to give yourself the gift of moving on. REALLY moving on. This is the worst part- the waiting and anticipation. I wasn’t lying yesterday when I said I RAN into the operating room. I wanted to be DONE DONE DONE. Hit it and quit it, here’s your hat- what’s your hurry? But even the 6 weeks I had to wait seemed like an eternity.

    Once its over the relief you will feel will literally bring you to tears.

    Please let us know if you need us.
    Love
    Suzanne

    • October 5, 2010 at 11:47 pm

      Suzanne, You are so rigt on the sitting and waiting. Every time I discover a “new” lump(fibrocystic)I wonder. If I could have a mammogram every couple of weeks, I think I would just to make sure. I don’t want to wait on my breast to kill me. I want to take a stand.

  3. October 4, 2010 at 7:41 pm

    Claudia,

    I too had breast molds made (the week before my mastectomies). It took a year before I could even take it out of the box and consider painting it. I am not an artist so I didn’t really know what to do with it. But I am now glad I have it. Your efforts to find closure with your body before embarking on your “renovation” will help you come through this life changing experience strong and healthy, both mentally and physically.

    You go girl!
    Joi

  4. October 4, 2010 at 11:23 pm

    Hi, Claudia. I’m Emily’s mom-Em lives in Charlotte and her dad and I live near Atlanta. Em and I both have a BRCA2 mutation and I had the pbm with reconstruction (tissue expanders and implants)two years ago. The plastic surgeon that helped me was the most amazing, generous, person. I had a great result…the only pain I had was when I had muscle spasms after a “fill” in those expanders. I’d also like to tell everyone about FORCE.org which has great message boards and lots of excellent info. Mary Pedersen

  5. October 5, 2010 at 10:56 pm

    Hi Claudia, I just saw the Msnbc episode about you and i just wanted to wish you luck in everything you’re doing. I’m sure someone will be looking over you and keeping you safe, I applaud you personally for the steps you are taking as a foundation for others to follow if they choose. You’re a beautiful girl and will remain so whatever you do in my mind. I love seeing your confidence and commitment & You’re a very strong minded person. Nice to meet you stranger, you have a new fan. Peace and Love Scot :)

  6. October 5, 2010 at 11:23 pm

    Hi Claudia!

    I also just saw the segment about prophylactic mastectomy, and your story really moved me. I greatly admire your courage for going through with this. On the one hand, it seems like an easy choice. This will help to lead a much happier and healthier life. However, I can understand how difficult this is. Surgery is a difficult and scary thing, and you will be giving up a part of your body in the prime of your life. I know you are making the right decision, though. You will be an example for others to follow and a role model for other young women to look up to. You will get through this! I’m sure your grandmother would be proud of you! :)

  7. October 5, 2010 at 11:26 pm

    I understand how difficult this decision has been for you. I made the same decision in June. My surgery was September 8th. I currently have my (rather uncomfortable) expanders. Some women refer to them as their “sponge bob square boobs”. LOL… I have to say that it really is a perfect name for them. I will hopefully get my implants in February. Regardless of the pain and fatigue I have not second guessed my decision even once. I know that I made the right decision for my health and for my family. My advice to you is to be patient with your body. Allow yourself to heal slowly. You will need help at home after you get home from the hospital for at least a week or longer. Someone will need to help you with your drainage tubes twice a day. Also buy yourself a few comfy sweatsuits. You will also need something that does not go over your head to sleep in.
    I could go on and on. Please feel free to contact me if you would like to talk about it. Just remember this too shall pass. You will be able to put this experience behind you and you will be so grateful and thrilled that you did it!!!

  8. October 5, 2010 at 11:41 pm

    Claudia, I am so proud of you. Take control of your body!! I lost my sister last September at the age of 54. She let a lump go untreated for 1 year. Her doctor told her that it was nothing to deal with right now. No problem he said. How does he know her body? We know our bodies. I have a younger sister remaining and three nieces. I had previously thought about having the BRACA testing. I talked with someone at my insurance company and they totally discouraged me from having it. I saw your story tonight on NBC Nightly News. You inspire me to once again start the process of having the testing. I am 49 years old. I turn 50 in December. I know that I could die the day after I have all of this work done but if I DO NOT DO ANYTHING to help my body I will have felled it. Best of luck to you in January and may God’s healing hand be with you you brave young lady.

  9. October 6, 2010 at 12:54 am

    Claudia, hang in there. I applaud you! I would do the same thing in your shoes. You are a very brave woman for sharing your story.

  10. October 6, 2010 at 12:55 am

    Hey Claudia! I was drawn to the TV tonight when I hear the topic of your profile. I had my mastectomies & reconstruction 5 years ago and have NEVER questioned that decision! My mother had her first mastectomy at age 31 so I was a raised in a home where having one breast was “the norm”. My oldest sister was diagnosed at age 40 and died at 43, leaving behind two daughters, ages 4 and 7. My mother was diagnosed in the remaining breast at age 75 and had her second mastectomy and bilateral reconstruction…after all those years. Six months later, my remaining sister, age 53, was diagnosed with Stage 4…she lived just one year. When I saw her xrays and scans, I knew that I had to do something.

    As an operating room nurse, I had been quizzing the surgeons for years so I was well-formed. As I prepared for my surgery, my mother had the genetic testing, as she was the index case. She did not have BRCA1 or BRCA2…but there obviously was some undiagnosed yuck in my gene pool. I did not let the negative test change my mind…it did not alter the facts of the history of my family.

    My friends say that they could see the relief on my face immediately after the surgery. I had a hysterectomy 2 mos. later..at age 49..my uterus had already been a bit of a trouble maker so they didn’t want to take the ovaries and leave the troublemaker!! I had nipple banking which worked very well….and gave me something to laugh about. My mother will be 83 in March as a two time survivor. This is not the best answer for everyone, but for those of us who DO choose this path, the peace of mind is a great reward. I wish you he best and applaud your efforts to educate and support others.
    God bless.

  11. October 6, 2010 at 1:03 am

    MY FATHER WENT THROUGH WWII AND KOREA. HE HAS TWO SILVER STARS AND THREE BRONZE STARS. MOST WITH OAK LEAF CLUSTERS, MEANING HE WAS INJURED IN COMBAT. I SPENT THREE YEARS IN THE MEKONG DELTA IN VIETNAM. BOTH OF US HAD INJURIES BECAUSE OF OUR SERVICE. I THINK YOU ARE ABOUT AS BRAVE AS ANYONE. AND A GREAT HUMANITARIAN AND SERVING YOUR GENDER FOR SHARING YOUR STORY. I DO NOT SAY I UNDERSTAND YOUR STRUGGLE, HOW CAN ANY MAN REALLY UNDERSTAND. STILL I GREATLY RESPECT AND SYMPATHIZE HOPE AND PRAY FOR THE BEST FOR YOU. YOU ARE AS MUCH A HERO AS ANYONE I KNOW! GOD BLESS YOU.

  12. October 6, 2010 at 1:08 am

    Claudia- I just saw your story on the NBC nightly news & just had to reach out to you. You are incredibly brave to share your story with the world- and with such confidence.

    It has been one year since my first surgery after making the tough decision you are also facing. Know you are not alone. This surgery saved my sister’s life, and I’m sure my own too.

    You are an inspiration, hang in there!

  13. October 6, 2010 at 2:08 am

    Hi Claudia, I was surprise when I saw the video and wanted to say that you are not alone. I just turned 24 a few days ago, but I found out that I am BRAC 2 positive 2 weeks before my wedding in 2007. I was 21 at the time. I can relate to you since I am around your age. I just want to share my story with you. My mom died in 2006 with breast cancer. I was 16 when she was diagnosed and I watched her get sick, lose her hair, go in recovery, and then get sick again. Someone once said that by the time I graduated high school I knew more than most of my peers. I knew how to take care of a sick parent, I knew how to take care of kids because my sisters had their first babies at the time, and I knew the responsibility of taking care of a house because I had to do all the house work while my mom was sick. My dad did help some, but not a whole lot on cleaning and laundry. He would help cook. Years before, when I was a fifth grader my mamaw was diagnosed with breast cancer and she caught it early and had the mastectomy surgery which took care of the cancer. She didn’t have to do chemo. A year after my mom passed away my aunt (my mom’s youngest sister) was diagnosed and luckily she caught it early too, but she did have to do radiation and chemo. After that, my family encouraged my sisters and I to get tested. My oldest sister was negative and I was positive. Our other sister still has not gotten tested. I think she is afraid. Well, I just wanted to share my story and let you know I will be praying for you. God bless and best of luck to you.

  14. October 6, 2010 at 2:46 am

    Dear Claudia ~ My mother has terminal fallopian tube cancer and is a BRCA2 carrier. My twin sister and I both also tested positive for BRCA2 earlier this year.

    As your genetic counselor stated during the MSNBC piece, it really isn’t a matter of “if” for me, it is a matter of “when” will I have a BPM and reconstruction. It is also a matter of which type of reconstruction. There are so many options at this point in time.

    Although it is scary to face surgery, I do know that I will do whatever I need to so that I can avoid going through chemotherapy as my mother has for the past three years. She has finally had enough and it is so hard to watch her struggle and suffer as we deal with end of life issues.

    My twin and I have both had prophylactic hysterectomies and bilateral salpingo oophorectomies and were estimated to be around 70-87% chance of developing breast cancer by the age of 70.

    My twin sister had her BPM with S-Gap reconstruction Aug 30th and another friend of mine had her BPM with DIEP reconstruction Sept 2nd. They are both very happy with their decisions. It does take time to heal and you need to make sure to give yourself that time. With my mother ill, my sister and I can’t both take the time needed to heal from the BPM and reconstruction at the same time. I am hoping to have mine done before the end of the year though as I have already met all of my out-of-pocket insurance expenses this year.

    I want to thank you and those that you are working with to bring genetic testing information to the public. There are many women that I know that have breast cancer running so deep in their families, but they know nothing about genetic testing. I applaud you for sharing your journey.

    Sincerely,
    Tonya P.

  15. October 6, 2010 at 2:56 am

    Claudia,

    I just wanted to say how much you Rock!

    You are inspirational and I pray you gracefully go through the ‘renovation’ stage with minimal pain and complications.

    It is difficult, so please continue to lean on your friends and family for support. You will need them, and they will be a source of comfort to you.

    Please email me at anytime if you have any questions or concerns. I believe you are having the same procedure as me and I am several steps ahead of you in the process.

    I also wanted to share, that I just knew when I hit the desired size I wanted to be at fill #5. Nothing too big or too small. Just right.

    I am sure you can agree with me that this time is very scary and nerve racking, but there is also an air of excitement to it. It is definitely a unique journey, and it is so enlightening and empowering to see what you are really made of.

    You Go Girl!

    Rach
    http://losingtheboobs.blogspot.com

  16. October 6, 2010 at 3:29 am

    Thank you for sharing your story. A friend called to tell me about the story on NBC Nightly News tonight. It couldn’t have come at a better time. I just made my first appointment to meet with a breast surgeon this month. I am BRCA 2 positive and have lost my mother and aunt to breast cancer. This was a scary decision, but I have 2 young children and I want to be around for them……and my grandkids some day. I will read your blog and use it as I prepare to make similar decisions.

    Again thanks for your courage to share your story as you walk through each decision.

    Tammy

  17. October 6, 2010 at 5:16 am

    Dear Claudia,
    I have just read all the previous comments. I HAVE A VERY DIFFERENT TAKE ON ALL THIS! My mother and her sister both died of breast cancer 35 years ago. I saw their bodies mutilated by double mastectomies in their 60’s. Cancer therapy has come a long way since then. I started getting mammograms at 40 years of age and am now 63 years old and have always been cancer free. My doctor feels that even though I have such close relatives with breast cancer it doesn’t mean I will get it. I have always watched my diet, alcohol consumption, and BREASTFED my 2 children as a preventive measure for breast cancer. Nursing my babies for 2 years each is the MOST CHERISHED THING I HAVE EVER DONE. I feel that is why they are both so very healthy and have gifted intelligence and are now in their 30’s nursing their own babies. I have never been tested for the gene and do not want to be…my breast doctor has never suggested it. (He is the head surgeon in the breast care center of a nationally recognized hospital.) I feel the choices I have made in my life have kept me cancer free. You don’t know if you would ever get cancer but you want to go through a painful operation and difficult reconstruction at such an early age? I’m sure you have a beautiful body, one that your future husband would love to hold. By loosing your breasts before you have children you are denying them the perfect nutrition and nurturing god intended for all babies. I think you are going through with this extreme plan far too early in your young life. One of my older friends got breast cancer and chose to have both breasts removed even though it was just in one breast. She said the reconstruction was terrible to go through and really didn’t have a very good result. She is old. You are so very young! If their plan for reconstruction involves implants, that is a foriegn substance that could cause cancer and side effects too!Every woman with the gene doesn’t get cancer..and your relative is two generations away from you. Mine was just one generation and I would never consider doing what you think you want to do at 23. With all the medical technology in place today even getting breast cancer now is not a death sentence. I don’t think your doctors realize what you are giving up. Please don’t harm your body now….you probably will never have to face breast cancer….save your breasts and enjoy your life. I would be more afraid of the operation at 23 than cancer at 50…in that many years from now they probably will have a perfect cure! Please consider what I have written..you don’t have to go through with this extreme plan at 23!!!

    • October 6, 2010 at 2:34 pm

      Judi, I am terribly sorry for your loss. I wanted you to know that there are many women who are BRCA positive that also choose not to have the PBM and undergo heavy surveillance. However, I think you chastised Claudia in an unfair manner. Kudos to you for your preferred method of managing your risk, and for doing something about it. But please don’t discourage or criticize someone in similar shoes who chose another path. All of us high risk women have a burden to face, and we all have different methods of managing this burden. This is Claudia’s way. I can’t blame a young, intelligent woman, who with known higher than the highest of odds, chooses not to be screened quarterly. For many BRCA women its not just a matter of when for preventive mastectomy, it’s a matter of when cancer hits, it’ll have to be done anyways.

      The other piece missing in the NBC report, is that not only do BRCA women tend to have an extremly high (up to 87%) risk for cancer, they have a 40% risk of recurrence within 10 years (10% if you don’t have the mutation), the cancer tends to be more aggressive and comes younger, and some studies estimate that a woman with BRCA mutation who doesn’t undergo the mastectomy as a preventive method has only a 53% survival rate by age 70.

      I applaud Claudia for her courage, strength, and for her ability to be open about her story.

      If you want to disagree, feel free, but the high risk community is about support. So please, wish her the best on her journey.

    • October 9, 2010 at 3:44 am

      I think this comment is harsh as well. I chose a preventative mastectomy (which has come along way from this woman’s generation – my plastic surgeon showed a photo book and maybe yours can too?). It did mean that I could not breastfeed my twin son and daughter. But they are not dying from formula and I will hopefully have increased my odds of being alive to see them grow up and be there for them. Any God that supports “breast is best” mantra and thinks that breastfeeding is better than a dead or sick mother is not a God I would follow or honor. As one friend’s mom said: if you go to a playground, you can not tell which kids were breastfed and which formula. It is a PERSONAL decision and not one that breastfeeding zealots have the right to judge you over. My husband said he is selfishly glad I am not breastfeeding because he gets a lot of daddy time with the twins as he feeds them too.

  18. October 6, 2010 at 1:18 pm

    Claudia,
    Thank you for sharing your story.

    I am a BRCA2 carrier. Five years ago when I found out, it was an easy decision for me to have my ovaries removed. I had watched my cousin die of ovarian cancer.

    But, it took me five years and two more cousins with breast cancer for me to have the courage to have prophylactic mastectomies. Last January, Drs. Willey and Spear performed nipple sparing double mastectomies at Georgetown. They are an superb team. You may feel totally confident that they will do their best for you. The post op nursing care was also excellent.

    However, don’t let anyone kid you. The recovery is difficult. But, today almost six months after the second procedure to have the expanders exchanged for the silicone implants, I feel great. The results are beautiful. It is hard to express the incredible relief that I feel. No more breast MRI’s and biopsies to worry about!

    Please feel free to contact me if you would like any specific tips concerning post-op care.

  19. October 6, 2010 at 1:56 pm

    Hi Claudia. I was intrigued by your story last night, since I just finished my reconstruction at Georgetown. My first surgeries were nine years ago when I was originally diagnosed with cancer in my right breast. This January I had a prophylactic mastectomy on the left when an MRI showed atypical cells. I was a patient of Dr. Spear’s both times and am extremely excited about the outcome! I also finally have the peace of mind I was without since that first devastating diagnosis. In the past my anxiety had been crippling. Please know that the poster who “breast-fed to protect herself” and “made choices to keep herself cancer-free” is speaking about her own fear of the decision you were able to make for yourself. And there’s no guarantee she will stay cancer-free. I also breast-fed (two and a half years) and was fanatical about my health. But I still found an aggressive, invasive tumor when I was 38. IF you decide to have children, you will have done what you felt you could to protect them from possibly losing their mother to a disease that kills far too many young women these days, a lot of whom are diagnosed while pregnant or breast-feeding. Sure, you’ll feel some anxiety before surgery, but it will probably be outweighed by a huge sense of empowerment. I felt so well taken care of by everyone I came in contact with at Georgetown and I wish the same for you. Good Luck!

  20. October 6, 2010 at 11:33 pm

    Hi Claudia,

    I just watched your story via the FORCE facebook post. I wanted to tell you good luck. 2 weeks ago I went through my prophylactic double mastectomy. I had found out that I was BRCA 1 positive at the beginning of March and having seen my mother and cousins go through the struggle with cancer, I felt it was the right decision to go through the surgery. Of course I am still recovering from my surgery but so far so good and I have no regrets. I wish you all the best with your surgery.

  21. October 7, 2010 at 3:33 am

    I saw your story on the news the other night. I’m sorry to hear about your situation. But my ears perked up when I heard that the genes you have raised your chances of eventually getting breast cancer 40%. I was immediately reminded that being on birth control pills raises your risk 44%. This is something that many millions of American women do every day – but there will never be a segment on a major network about that.

    http://polycarp.org/statement_mayo_clinic_article.htm

    There is another resource regarding what is causing the epidemic of breast cancer in the USA here:

    http://gerardnadal.com/category/breast-cancer/

    My question is, if having these genes are making women get mastectomies at 21 – I hope you have considered ALL the things that cause breast cancer instead of just the ones that the medical and pharmaceutical industries want to promote and talk about.

    It’s not your fault, of course, that we suffer from this national mental illness that has us demanding that men go on national TV to apologize for taking steroids while we get our girls on them at age 13. But I just hope you are putting everything into proper perspective and not being fooled into thinking this is one, huge, horrible, very effective way of getting breast cancer while ignoring all the others the media doesn’t want to talk about.

    There are very few women who get breast cancer at your age. PERHAPS you are over reacting to getting some bad news. I don’t know, and I respect the decision you’ve made. I just hope that you have been aware of EVERYTHING that is out there regarding the determination of relative risk as compared to so many others that are kept hidden from us.

    That is, there are millions of women doing something every day in America who are putting themselves at greater risk of getting breast cancer than the news you got about your genes. And none of them are lining up to get double mastectomies. Strokes are very common on both sides of my family also. But only much later in life.

    • October 8, 2010 at 1:51 am

      Hi Sean,

      I just wanted to point out that the study about birth control said that women who take it might increase their risk of breast cancer 44% over baseline. If an “average” woman has an 8% lifetime risk than 44% over baseline takes her risk up to 11%. And most of those would most likely come about in the post-menopausal years, increasing with age.

      However, BRCA mutations give a woman not an 8% lifetime risk, not an 11% lifetime risk, but an 86% lifetime risk. Very, very often these aggressive cancers occur premenopausally. This genetic condition frequently strikes young women.

      My mother had premenopausal breast cancer. I watched her fight for her life when I was age 8. Again, in my 20s she battled the disease again. She died before she ever met my husband, my child. . . . Too see that kind of devastation to the person you love so dearly is heart wrenching. How I wish that prophylactic mastectomy would have been advocated back then!! She would have been here with me and I wouldn’t have to live with only her memories and pictures and not her.

      I admire Claudia so much. I, too, will choose to have a similar surgery sometime in the next few years. I cannot go through what my mother went through. I cannot worry that I will not be here to raise my children and care for and love my husband. I cannot live my life in 6 month increments scanning and testing for when it is there and what treatments to pursue. . . . My goodness, with the amazing cosmetic results now a days, why not!! A small price to pay for longevity of life and peace of mind.

      I know your comments, Sean, were written with a good heart and good intentions. I just wanted to point out that the BRCA gene mutation often strikes young women more aggressively than you may be aware.

      Thank you again Claudia! You inspire me every day!

      M.

  22. October 7, 2010 at 6:45 pm

    Hello Claudia and many supporters!

    YOU GO GIRL!!!

    Your story is inspiring and thought provoking. I hope the media exposure will help other women who are BRCA1 and/or BRCA2 gene carriers to consider the high risk they have and consider becoming a previvor.

    I am a cancer survivor. (Actually I prefer to thrive rather than just survive) I applaud your courage and know from reading about you that you will thrive after your BPM.

    I have some thoughts to share based on my experience of living with cancer that I hope will reinforce your decision. And please know that I LIVE the majority of the time… I only deal with cancer when I absolutely have to!!!

    I am not a BRCA1 and/or BRCA2 gene carrier. I was diagnosed with breast cancer in 2003 when I was 46. Treatment was lumpectomy followed by radiation. Chemotherapy was recommended due to the size and growth pattern of the tumor. Of course I wanted to do all that could possibly be done to prevent a recurrence or metastasis. So I had the chemo. I wanted to be done with cancer, never deal with it or any of the physical and emotional stress that accompanies it!!

    Well that wasn’t to be.

    Several studies reveal that women who received chemotherapy for breast cancer are being diagnosed at higher rates than the average person for leukemia and lymphoma.

    I will never know if the chemo that was given as a prophylactic measure for the breast cancer was an influencing factor or not, but I have been battling non-hodgkin lymphoma, almost continuously for the past 4 years. I have gone through the lengthy, frustrating, and painful process of suspecting it’s there, diagnosing it through multiple tests, waiting for biopsy results, deciding on treatment options, receiving various treatments and then monitoring afterward 3 additional times since the breast cancer.

    It is likely that the lymphoma will return.

    I had multiple cycles of chemo, bone marrow biopsies, surgeries, implanted central venous access devices (ports), autologous stem cell transplant, raioimmunotherapy, blood transfusions, countless PET/CT scans and even more frequent blood tests. My family has been through misery over and over.

    My story is typical. I have not been through anymore than thousands of others. And just like them, my life will never be the same.

    You are wise for doing all that you can do to prevent cancer! Your risk is very high. You have an option that will take your risk to nearly 0% chance of ever getting breast cancer. Of course, there are no guarantees of anything. I support you 100%. I hope that you will never need to face this ugly monster.

    Positive thoughts and energy produce positive outcomes!!

    LOVE, LAUGH and LIVE!!

  23. October 7, 2010 at 10:35 pm

    I applaude you for you bravery, but feel compelled to make sure you understand your risks regarding lymphedema. I urge you to research lymphedema on the National Lymphedema Network’s website.

    This is an abnormal swelling that can happen after major surgery, and you don’t need to have lymph nodes removed. Major surgery will cut lymphatic vessels and increase your risk of developing this lifelong disease that has no cure. I am an OT, and certified lymphedema specialist and have treated hundreds of people who wish their surgeons had informed them about lymphedema. Obviously, when you have cancer you must remove it, but in your case I’m not sure if you are trading the BRCA2 gene for another “monster”.

    This abnormal swelling can happen anytime after surgery. I have seen some patients 4 months after surgery and some 15 years after surgery. Lymphedema is progressive and will get worse over the years if left untreated. Treatment involves therapy and wearing of compression on the afftected area both day and night.

    I don’t mean to be an alarmist, but this is a condition I treat every day. Many of my patients have said cancer was bad, but at least that was treated with surgery, chemo and radiation. This lymphedema is the pits because is has no cure and will be with me the rest of my life.

    Please just research your risks. After breast surgery the average time patients observe signs of swelling occurs around 39 months. By this time, many surgeons are no longer in regular contact with their patients.

    I wish you well. I hope this information is not new to you, but if it is, I welcome any questions.

  24. October 8, 2010 at 5:51 am

    Hi Claudia,
    I just wanted to give you a virtual high five! I too am BRCA1 + inherited from my father. I am also planning a PBM in January. We can be surgery buddies! I will be closely following your blog to compare experiences!! Thanks for sharing your story and raising awareness!

  25. October 8, 2010 at 3:22 pm

    Hi Claudia,
    I just read your article in LHJ and found your awesome website! I am 29 years old, and in July I found out I am BRCA 2 positive. In my family my mom and three generations of moms before her have all lost their battle with breast cancer. My mom was 43 and left 5 children behind. Breast cancer is just not an option for me. My surgery is scheduled for Dec. 9th and I can’t think of a better way to celebrate my upcoming 30th birthday – the opportunity to previve and live a long life.

    I’m so grateful for the support your website provides, and I look forward to reading your posts as we take this journey. Don’t pay any attention to the negativity that may be out there. We are doing this to save our lives.

  26. October 9, 2010 at 2:15 am

    You go girl! It is a very smart decision, and one that I also made after my sister, grandmother, and mother all died of breast cancer. I tested BRCA1 positive. The mastectomy was not painful; I did not need painkillers until it was time to do the reconstruction with the expansions. I just did it after I tested positive and I do not regret it. After getting pregnant, I am now getting implants taken out because during pregnancy it destroyed skin around implants. I am choosing to live without real breasts or implants. And realize that with reconstruction it does not last forever so about 10-15 years you would need to do them again. And you do not always get MRI or mammograms after a mastectomy.

  27. October 9, 2010 at 3:27 am

    You are not over reacting. My sister was diagnosed at age 29 and died at age 36, leaving behind a 4 year old son. Do not let anyone talk down to you or doubt your decision because you are young. You are young but also smart. People do not seem to think of cancer affecting 20somethings, but it does.

    If ovarian cancer is strong, think about getting those removed by age 40. Sure it means thinking about when you will have children if you want them but whatever: your biological clock does too anyway.

    And any partner that does not want you because of a mastectomy is not one who truly loves you. That partner you can give your removed breasts to and keep looking for the one that loves YOU.

  28. October 15, 2010 at 6:49 pm

    My darling Claudia,
    I’m so honored you mentioned our special time together, and outlined my choices on waiting for surgery. I couldn’t have said it any better myself! While I whole heartedly admire and respect your decision, it is YOUR decision. Every woman is different and needs to do whatever she feels is right for her health, her body, and her life. Like I told you that HOT day in September…I couldn’t do it…not yet, anyway. But your strength and courage inspires my every single day. I know at some point, I will want to go through this same scary and life changing experince that you are. Just knowing that you could do it is empowering to me. Love you so much girly!!!!!

  29. October 24, 2010 at 3:59 am

    Dear Claudia,
    I whole heartedly feel your decision on ‘previving’ cancer is one of the most impassioned, heroic, and humble expressions of the power of will. I heard once that it is important to learn how to tell your story because you create value for others- we can all learn from one another when our hearts are open. Though you don’t know me, your story has changed my life. After six or more years of uselessly watching a decline in my health from an unknown disease, I now know it might be linked to female concerns and quite possibly was inherited. Knowing my mother had her hysterectomy in her twenties keeps me questioning what must come next in my own path, being that I am nineteen feeling like an 85 year old. Every cell of my body seems to enjoy the sunshine every day, but deeper within lies what has slowly taken even the simple most tasks from me. But I am exhausted. I want a healthier life so I can live happily longer, and accomplish what I was brought to Earth for. I’m hungry for health in a sense. And when one is hungry one is committed. It is difficult, I think, for many in our society to understand what would drive someone of such a young age to the prevention you have boldly decided to do when you aren’t necessarily sick. But those are the inside the box thinkers. Solving for the long term will be (outside of the box :)) much more of a relief than worrying constantly about re-solving the initial short term solution. Les Brown once said most people won’t participate in their own rescue; however, you shouldn’t wait for recovery- drive yourself to recovery. I can’t relate entirely to your situation and won’t pretend to- but I want you to know my heart reaches to yours on a level of understanding. The waiting is a pain:). It is full of anxiety, worry of disappointment, and endless questions. In a previous blog you spoke of how courage is doing something one is afraid to do. And this idea changed my thoughts about my own health. It is comforting to see not only how strong you are in this experience, but also to know you understand the weariness that comes along with prevention. I don’t know what may happen, but I pray for you that when all the waiting passes, you will feel a full delight of relief.
    I also wanted to write to thank the team of PREVIVE from the deepest whole of my core, that what you are doing is one of the most worthwhile projects to be a part of. No doubt it is difficult to put the process together and thank you for making your own sacrifices for the inspiration of others.
    Sincerely,
    A friend

  30. November 7, 2010 at 4:25 am

    Dear Claudia,

    I wish you all the best for your surgery and empathise with why you have chosen it! I have a family history on both sides of my family for this disease, and have suffered so much anxiety over many years as a result of screening and suspicious lumps etc that I too am opting for a prophylactic mastectomy which I’ll undergo about a month after yours.

    I went through months of ‘genetic counselling’ recently, which resulted in the geneticist saying she would not test me because my father’s family were all negative – and funnily enough, no one on mum’s side of the family have lived through breast cancer to be tested. It was agonising to hear this because I was, in a way, hoping to be tested and allow that to help me make my decision. I didn’t think anyone would operate on me without that extra information. After another MRI showing a new development in only a nine month period, I made my decision anyway.

    Luckily I have found a wonderful team of surgeons who did not dismiss my fears as silly, nor deem me a surgery junkie or hypochondriac as so many other specialists and family members even have made me feel. I am excited about my surgery, excited at the thought of living without fear, and to some extent, excited at the chance to have smaller breasts!! Of course, it’s nice to say that we will be living without fear – but I understand how scary it is to be waiting for that surgery, and how you are no doubt doing an emotional see saw at the moment (like me!). I’m sending you mental hugs! And I can’t wait to wake up on the 10th February and say ‘whew, it feels good to get that off my chest’ just to get a laugh out of the nursing staff! :)

    Thank you for sharing your story and helping others in a similar situation realise that there is a lot of support to be found, and we are not alone.

    All the best.

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