Choosing Life (and Nipples)
By Claudia on July 16, 2010 | Category: Claudia's Blog | 22 CommentsToo much time has passed since I last wrote. I’ve made some big decisions, met some incredible people, and lived some remarkable experiences. Where do I begin?? About six weeks ago, I met with two different teams of breast and plastic surgeons, who had been referred to me by my girlfriends, all pleased as punch with their new, beautiful cancer-free breasts. The first team was in New York City at Memorial Sloan Kettering Cancer Center. I couldn’t sleep one wink the night before my first consultation. I felt like an over-anxious five-year-old on Christmas Eve, awake all night with too much excitement and anticipation. By the time my alarm sounded at 5:30am, I jumped out of bed, threw on my pink wardrobe, and was ready to go within minutes. The day had finally come when I’d meet with a breast surgeon and discuss how a sharp metal scalpel could release me from the shackles of hereditary breast cancer. I want nothing more than to be set free, and this doctor held the key.
Signing my consent for a double prophylactic nipple-sparring mastectomy.
The doctor greeted me with a big, warm smile and a firm handshake. I was afraid she’d look at my young face, grimace and begin drilling me on my decision. But she never questioned me, not once. In fact, this esteemed breast surgeon said it made perfect sense so long as I felt comfortable. I guess comfortable is one word for it. Ecstatic, anxious, eager, and excited are word that constantly fill my mind.
And that morning I felt so comfortable that I eagerly signed off my consent for the surgery the minute she left the room. January 10, 2010 would be the day when I’d wake up from a four-hour surgery, still groggy from anesthesia, and realize that I’d done it. I’d beaten off breast cancer before it ever had a chance to rear its ugly head. I can only imagine the pride that I’ll feel, knowing that I saved my own life. I’m smiling just thinking about it!
The following week my mother and I met with a breast and plastic surgeon at Georgetown University Hospital just to get a second opinion. I live only minutes from the hospital and used to volunteer in the breast surgeon’s office, so I figured it was worth a shot.
It was love at first sight. Dr. Shawna Willey had me the moment she walked through the door. As Director of the Betty Lou Ourisman Breast Health Center at Georgetown University Hospital, Dr. Willey has a fair amount of experience as a breast surgeon underneath her belt. In fact, she performs well over 100 mastectomies every year, and a decent number of these surgeries are preventative. Dr. Willey spent nearly an hour with me, discussing the different types of incisions she could make, the types of tissue she would be removing, and the setbacks and advantages to keeping my nipples.
My nipples was a sensitive topic. When I first decided to have the mastectomy, I figured I would remove my nipples because, heck, I might as well. If I was going to carry through with such a radical procedure with the sole purpose of reducing my risk, I should reduce every last bit of it that I possible could. I felt that by keeping my nipples, I would leave behind too many breast cells that could later turn on me with a vengeance.
Me meeting with Dr. Willey's *incredible* nurse at Georgetown University Hospital before the consultation with the surgeon. I was already loving the staff and their impressive expertise, as well as their doting attention!
Me meeting with Dr. Willey's *incredible* nurse at Georgetown University Hospital before the consultation with the surgeon. I was already loving the staff and their impressive expertise, as well as their doting attention!
But both the New York breast surgeon and Dr. Willey encouraged me to give my nipples a second chance. Dr. Willey said that she used to never allow her patients to keep their nipples, that the nipple-sparring procedure was at first considered blasphemous in the medical community. But she’s done her homework over the years and feels that it’s a perfectly safe, acceptable option, especially for someone as young as myself.
When Dr. Willey presented the case for my nipples, I felt nothing but relief. I was willing to remove them and reconstruct a new set, but I really grieved the thought of parting with them. Unlike my breast tissue, my nipples have always been with me, even as a little girl. By removing them, I was making one more sacrifice to this battle against my genes. I was willing to do it, but it made me happy to think I could keep this intimate piece of me and still sneer in the face of breast cancer. Hah!
The plastic surgeon, Dr. Spear Scott, was equally impressive. Dr. Spear spent another hour with me, drawing on my breasts, showing me the incisions he could make and the reconstructive benefits of each. The incisions the doctors make at Georgetown University Hospital are slightly larger than those made at Memorial Sloan Kettering in New York. But I’m not willing to risk it, seeing that I have enough risks already. If Dr. Spear thinks he needs a larger incision to get out as much breast tissue as possible then that’s what we’re going to do!
This was the first time that I had seen and felt a silicone implant – the same kind of implant that may eventually give me breasts again!
This was the first time that I had seen and felt a silicone implant – the same kind of implant that may eventually give me breasts again!
Dr. Spear also discussed a few of my options for implants. Here’s the thing, I want my breasts to pop afterthis. If I’m going to remove my breasts and endure months of reconstruction, I want the sexiest, perkiest boobs in the market. They may look fake, but that’s because they will be. I’m not one to put on pretenses anyway. I can’t wait for the final product!
Now I’m left to wait. Dr. Willey and Dr. Spear’s offices do not allow anyone to schedule surgery until it’s at least three months out. Since I will have the surgery in January, I have a good three months to wait until I can mark a date on my calendar. In November, I’ll meet with both doctors again just to solidify plans and procedures. Then it’s show time.
I wonder how I’ll feel in those few remaining months leading up to the surgery. How will I feel as I walk into the operating room and lay myself down on the table? How will I feel when I wake up to realize that I’ve actually been set free, that I’ve defied my destiny and can go on living my life? How will it feel to be normal, like so many other women, and not live with breast cancer constantly looming in the near distance? How will it feel to rescue myself and become my own greatest hero? Will I ever be afraid again? Will I live my life differently, more courageously and boldly?
I think the greatest gift that we can give in life is inspiration. It’s the gift that keeps on giving. And, through this process, I’ve inspired myself on so many occasions to take that risk, go on that date, create new relationships, and to keep dreaming big, because I choose life.
22 Responses to “Choosing Life (and Nipples)”
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Steph H
September 3, 2010 at 12:04 amI can’t recommend nipple-sparing enough. For me, at least, keeping my nipples has been so essential to the emotional and psychological recovery from surgery. My breasts make look different now (and, unlike you, I’m not a fan of the fake boobed look, and I still have a hard time with the fact that though my reconstruction is superlative, my new boobs are in no danger of being called natural-looking) but at least I recognize the skin they are stretched over. I remember waking up from surgery, woozy from the anesthesia, and peeking down my hospital gown and thinking “Oh my god, that’s still me. I recognize my body despite the incisions and bruises.” And that was all because I chose to keep my nipples. So I say go for it. You definitely won’t regret it.
Cheers, Steph
Claudia
September 3, 2010 at 12:07 amThank you so much, Steph! It helps so, so much to hear from other women who can speak from experience. I never thought about it like that before – being able to still recognize my body despite the changes it will have gone through. I like that a lot 🙂 Thank you again for sharing with me!! I’ll be thinking of you!
Elizabeth Vivenzio
September 3, 2010 at 12:13 amWow! Your depth of character, Claudia, is fascinating! You certainly will inspire others, especially young women like yourself, who are making this decision in their 20s.
The rewards you will reap on this mission will fill your life with tremendous fulfillment and satisfaction. Thank you for selflessly sharing your story with us and baring your soul. It is a privilege to read this blog and follow you on your journey!
rachel from canada
September 3, 2010 at 12:15 amomg. what a poignant post. the way you word your experience and hope is so empowering. i don’t know why i still have this feeling of shame around my decision. it’s like i did this to myself…but in reality my genes and losing my mother so young to breast cancer did this to me. i did not have a choice.
i will return to this post when ever i am feeling down. your words and view point have completely lifted my spirits. thank you so much! between you and the beauty and the breast project ( http://www.beautyandthebreastproject.com/index2.php )i came across it has been an inspiring and empowering day!
thanks for the update!
rach
Claudia Gilmore
September 3, 2010 at 12:16 amWow, Rachel, thank you so much!! I think your feelings are completely valid and really quite normal. There are times when I get angry, when it seems unfair that we have to endure so much just be on an even playing field with the rest of the population in terms of our cancer risk. Although it makes me so, so happy to think that my words have helped you find a different perspective. I’ve met some really tremendous, courageous, empowering women along the way who have role-modeled for me what it’s like to take this experience and make the very most from it. They’ve been my inspiration and it really warms my heart to see that inspiration making its way to you.
Lots of love!!! xoxox 🙂
Chuck
September 3, 2010 at 12:17 amHey lady! Found my way over here finally and can’t tell you enough how I’m totally rooting for you. You have my prayers and my support!
Claudia Gilmore
September 3, 2010 at 12:17 amThanks so much, Chuck!! That means a lot! I hope all is well with you, Kat and your family! Hope to see you soon! 🙂
Nipples
September 3, 2010 at 12:18 amWow, thumbs up for you for sharing your experience!
keep us with updates 🙂
Joi Morris
September 3, 2010 at 12:18 amClaudia,
You are in great hands, but the waiting is tough. I had my prophylactic oophorectomy last week and was totally frustrated when I could not set the date back in the spring when I finally made the decision. I felt so much better once the surgery date was on the calendar and set.
Looking forward to following more of your journey.
Joi
http://positiveresultsthebook.blogspot.com/
Claudia Gilmore
September 3, 2010 at 9:20 amoi, I couldn’t agree with you more! Ever since I made up my mind about this in March, I’ve been itching just to get ‘er done! I wish there was a special time warp I could get into so January could come sooner. I think having a surgery date will also make me feel a lot better. How are you feeling after your own surgery? My mother had an oophorectomy a couple of years ago, and even though those ovaries are little, they sure do a lot for the body – a lot of things you don’t even realize until they’re gone. I hope your recovery is going well, and I’ll be writing with more updates soon! xoxo 🙂
Nancy Pretto
September 3, 2010 at 6:16 pmI admired you..My respects…Life is beautiful isn’t it?!!!!!
Marissa Levesque
September 4, 2010 at 1:19 amI am 24 years old, and one year ago, at 23, I went in for my first surgery, a bilateral mastectomy. I have been going through reconstruction ever since, and even though I have had complications, they look great, I’m not petrified of them anymore, and I would do it over again in a heartbeat! I am in the process of starting a non profit organization, called Pink-Surance. I could not sit there, and not help other women that are in the same situation I was, as well as you. I plan to fund genetic testing for high risk women, prosthetics and other post surgical needs, and to advocate for the fertility treatments that can prevent the passing of the gene mutation to babies. I cannot believe that there is an entire floor at the Breast Health Center at Women & Infants Hospital, in RI, dedicated to these treatments, yet not one person I have spoke with knows it is even possible to do. The fact that we as young women are now taking charge of our bodies, and ensuring that we will not have to endure what so many women in our families has had to…is AMAZING! GO US!!!!
Sissa
September 8, 2010 at 6:58 pmMy dearest friend, Nichole, died of breast cancer this past Spring. She, too, had the BRAC gene. At age 30 she was encouraged by her doctors to have the surgery you have wisely chosen to have. My friend said that she did not heed their warning and she hoped for the best. When she was diagnosed 3 years ago in her early 40’s she was devastated and realized that she should have taken care of herself by opting for the preventive surgery. We all wept when she lost her valiant fight with breast cancer. Thank you for sharing your story, Claudia, so that other women will have the courage to take control of their risk and choose life! With love, Sissa
Kara
October 5, 2010 at 11:39 pmClaudia, I applaud you for making the decision and being strong. I was diagnosed with the BRAC 2 mutation two years ago. I, too, chose a bilateral mastectomy-nipple sparing procedure with immediate reconstruction. I also had an oophrectomy which was a very simple procedure. Luckily, I did not need tissue expanders and could have the implants immediately. I must say we did alot of research on the nipple sparing procedure and it really paid off. I also have about 4-5 inch incisions, which after 2 years, are faded and not really visable. The only complaint is that my silicone ‘gummy’ implants have a ‘wrinkling’ effect when I move about. So unfortunately, I have to be careful how low cut a top/dress I wear or I just really wear a push up bra to tighten things up and prevent the wrinkling. I was worried about physical limitations (i.e. unable to perform push ups etc. ) Well, I am just turning 40 and my husband and I have completed P90X and Insanity Videos.Note: always check with your surgeon..they all have different opinions. I have never been more buff in my life and the girls are staying where they should be. They stand straight and proud just as I am for doing this for myself, my husband and my children! Kudos and good luck!
Mary selden
October 9, 2010 at 1:03 pmI choose to have my nipples removed. I was told that there was still breast tissue left in the nipples and I wanted all tissue gone. My Plastic surgeon gave me new nipples and I love them. I guess it’s all whatever that patient wants. Good luck, I’m praying for you.
andrew salzberg
October 12, 2010 at 1:19 pmI believe the best option for yopung women is the Total Nipple Areolar Sparing mastectomy with immediate implant reconstruction which we offer. If you have not been offered this option you are being given less than adequate info. Please consider as both for cancer risk and aesthetics the results are superior over the past 9 years.
badmash
October 22, 2010 at 6:38 pmI just signed up to your blogs rss feed. Will you post more on this subject?
Rebbeca Serrao
October 23, 2010 at 10:06 pmThis is very intresting, You are a very skilled blogger. I have joined your feed and look forward to seeking more of your great post.
Mandy
December 8, 2010 at 10:50 pmBRCA2 – I am on the fence about keeping my nipples.The increased risk of cancer in keeping them, versus the psycological.. wanting to wake up with nipples and not wait 2 yrs for nipple reconstruction. I have heard that if you keep your nipples, they are always in an erect state, does anyone know if this is true?
Jami
December 16, 2010 at 3:32 amI still have my own nipples after bilateral mastectomy. Dont really notice that they are “always” erect. I am very pleased with the suggestion from the surgeon to keep my own nipples because of my age. They look almost normal if you look past the small scars
Previve
December 22, 2010 at 1:59 pmMandy, thank you so much for your post!! My surgeons at Georgetown told me that they’re about to release a study stating that in the 150+ nipple-sparring mastectomies they’ve performed over the past 10-20 years, none of their patients have developed a recurrance or even a first diagnosis at all! After hearing this, I felt muuuch more comfortable about keeping my nipples! And, like my surgeon said, if some new data comes out that is contrary to the developing statistics, something stating that nipples are not worth keeping at all, then you can nip them off in a really quick procedure. ALSO, I asked my surgeons about whether or not my nipples would be erect. They said it just depends upon how they cut into the skin/muscle during the surgery, that they won’t know themselves how it turns out until after the surgery. Some women’s nipples still react like normal after their mastectomy. Other women’s nipples are always erect, and others are never erect. It all depends upon how much they need to cut! I hope that helps!! Sending you lots of love!!
breast cancer
January 11, 2011 at 2:32 amVery nice information.