From Full Reconstruction to Flat: My Decision to Explant Eight Years Later

February 05, 2018 21 Comments

From Full Reconstruction to Flat: My Decision to Explant Eight Years Later

 

Guest Post by Samantha Paige

Photos by Lisa Field

 

I missed half of my senior year of college for a thyroidectomy and radiation after a sudden thyroid cancer diagnosis weeks after my 21st birthday. I spent the following decade in and out of hospitals for follow-up testing, chronic migraines and PTSD-related anxiety, depression and panic attacks. At some point during that period, I tested BRCA1+ and was then overwhelmed by the ongoing MRIs and mammograms, thereafter imposed, because of my genetic mutation, prior cancer and my mom’s own (gratefully successful) bout with breast cancer in her early thirties. Eight years ago, I elected to have a preventive double mastectomy shortly after my daughter was born. In light of my new role as mother, I desired to mitigate as much risk as possible, as my nerves could not handle the constant pressures, fears and testing around another looming cancer diagnosis.

I had contemplated the prophylactic decision for years and, in discussing what that would look like, reconstruction with silicone implants was the only option I remembered being presented with any great support or detail. I recall asking questions about using body fat instead of silicone, but did not push the discussion too far when met with replies about my lack of ample body fat. I also recall someone very close to me at the time encouraging the implants, so as to “look normal” for my daughter and to “go as big as possible” (the infamous “reconstruction is a boob job” view). I ended up with arguably perfect, gorgeous and quite large reconstructed breasts, but was never comfortable in my body.

 

 

Almost exactly eight years to the day, this past January, I had explant surgery. I had not been feeling well for years and hoped the explant would help, which it did. Equally importantly, I did not feel whole, sexy or connected to my implanted chest. It always felt foreign to me. The most important aspect of my decision to remove my implants was not a gallant act of bravery, nor a rejection of boobs, foobs or anything in between. It was an act of self-love and self-honoring. It was a moment of truth. I have spent the last five years of my life making consistent (within myself) the inconsistencies of decisions made along the way. I left my marriage, closed my business, ended a cycle of betrayal and edited so many other internal and external areas of my life that had contributed to my lack of physical and emotional wellbeing. I have taken the time to assess what was no longer working and lived the consequences of much heartache and liberation in the process.

 

 

My implants were another place within myself, literally and figuratively, where I knew I had said "yes" when I should have said "no." I have no regrets. I had not yet honed, or cleared enough of the interfering noise to hear, my own opinions about my emotions, my life and my body, or how to stand up for those truths. So, in removing my implants I was making another "last cut," or significant decision that brought me closer to my truth, as I call them in my book and photo documentary, Last Cut. After twenty years of intense health challenges, the lens of my memoir highlights the power of finding clarity around what is most true for each of us and how we live that. So even when we are overwhelmed, scared and often rushed, it is incredibly important to ask the questions, be informed, do our homework, take our time (when possible) to digest and react, own our own bodies and make our decisions based on our own voice and not the (often negative) internal and external ones that chime in.

 

 

I spent eight years completely ignoring the upper edges of my torso. I detached and disassociated because, even though I had an exquisitely perfect set of foobs, I did not feel like myself. I did not feel sexy. I did not feel any sensation. I could not make them move. I could not sleep well. I could not lie on my stomach, and I was often sick and lacking in energy. I would exercise and feel worse. It was an uphill battle, and I did not even appreciate how I looked. Yet, I didn't put two and two together until a friend brought her own decision to remove her implants to my attention. My implants and post-mastectomy chest served me well for a while, but the day I opted to say goodbye to them was one of the most powerful and beautiful days in my life. I entered the familiar OR with confidence, calm and grace, because I was making a decision that was consistent with my personal, and very internal, needs and desires.

I know I made the right decision for me. I am healthier. I feel sensation across my chest once again. I feel sexier (especially in my gorgeous AnaOno bras). I am renewed and connected to my body. I am whole. I am proud. I am consistent. I feel true. I can now look my nine-year-old daughter in the eye and talk about body positivity and self-love with confidence, because I feel it within myself. I can move through the world without wanting to hide, as I have reclaimed my personal power and a confidence in myself that was lost, not only with the mastectomy, but also through thyroid cancer, a hysterectomy and other previous health challenges. I chose what was right for me and that is incredibly empowering.

 

 

There are certainly many unknowns still to be confronted and explored, as I am only seven months into this chapter. As I explanted while single, I have no clue how it will feel to show this revised body to a new partner. I have no clue how I will be perceived or the questions I will be asked. I joke with my friends that, if I ever try online dating, I would not know what to write. Creative artist type with short dark hair, light green eyes, tattoos and no boobs (or thyroid or uterus or ovaries) loves to travel, read, cook, walk and visit farmers' and flea markets, speaks fluent Italian and Spanish, writes and loves to dance and drink coffee. Did you catch the no boobs? I have no clue how to do this next part, but staying true to myself seems the best way to attract the right partner or anything else I want in life. If I make decisions with truth and consistency, I feel whole and healthy.

I am sharing my story not to preach for or against implants or the decision to explant. This is simply my story. These are incredibly personal decisions. Each woman must look within to find direction and answers about her own body. I am sharing my story because I have learned the power of asking myself powerful questions as I face issues, big and small, seemingly in my control or not, in order to make empowered decisions that will create lasting internal wellness and harmony within my life. Being able to look myself in the eye after my explant surgery has been the greatest gift of post-cancer health. If I leave you with anything, I hope it is a desire to honor and love yourself enough to make whatever decision you know is right for you. I hope I inspire you ever so slightly to claim, live and write your own story.

 

 

---

Samantha Goldstone is an artist and mother with a passion for life. As a young adult cancer survivor and BRCA1 previvor, Samantha has learned to use life experiences as fuel. Her health challenges have been her greatest teachers. After 6 major surgeries and some lovely scars to show for it, she is happy to feel stronger and healthier than ever.

Samantha speaks fluent Italian and Spanish, loves to cook and takes every opportunity to travel and explore the world. She is constantly reading {real paper} books and has a strong proclivity for cookbooks. Making and appreciating art has been a love of hers since childhood. Samantha can often be found at her local farmers’ market and especially loves to visit food and antique markets and eat the local fare wherever she finds herself in her travels.

You can find out more information about Samantha and her documentary project on the web and across social media:

Website: http://www.thelastcut.net

Instagram: @lastcut

Facebook: @lastcutproject

Twitter: @lastcutproject

 





21 Responses

nery yvette leslie
nery yvette leslie

September 28, 2018

THANK YOU my sisters for sharing, I had a bilateral mastectomy and immediate reconstruction Jan 2017. I then had chemo and radiation that left me with 2nd and 3rd degree burns. I started taking Tamoxifen last September, which I stopped taking July 26th. I develop grade 3 encapsulated contracture and had surgery June 27, 2018. The doctor told me I had a high chance of getting an infection. Two weeks later I was in the hospital with antibiotic IV for 5 days for an infection and home for another 9 days on antibiotic IV. September 17, I called my doctor after spending a week not feeling well. My breast was larger than normal; I had open blisters that were secreting fluid; as well as redness. I just knew that I had again develop an infection. The following day during my visit, my suspicions were confirmed. Surgery was schedule for the next day. It has been one week exactly since my surgery, I had always felt as if I was carrying around a sack of potatoes (my left implant was bigger than my right) It hurt and was uncomfortable at night. I just about had to have support 24/7.My daughter was concerned for me after the surgery, how I would feel about the scars. LOL I told her this is the most normal I have felt since my journey began! I feel free! I cannot wait to have the other implant removed; as well as my port! My surgeon would only do one at a time. #survivor#warrior#thriver#blessed

Susan
Susan

June 25, 2018

Hello Everyone and thank you for the original post and all the comments.
I too had a left breast mastectomy and decided to have immediate reconstruction, with strong encouragement from people close to me. I was on the fence for my initial decision for reconstruction, but proceeded anyway. About 5 weeks later I ended up with a MRSA infection, and all reconstruction needed to be surgically removed. My surgeon advised me to wait one year before another attempt. I was relieved to have everything removed, to be pain free and to have a year to consider my options. After a year passed I decided to have all extra skin removed and to remain flat. Best decision I made and glad to have all of this behind me.

Finally I can move forward and no more surgeries or complications. In about a month I will get fitted with a custom prosthetic (built using computer aided design), which should be lighter and more comfortable to wear.

Karen
Karen

June 22, 2018

After reading this story, as well as all the comments, I feel so very fortunate that my oncology surgeon was completely understanding about my choice not to get reconstruction. I knew I would never feel comfortable with it and she felt it should absolutely be my choice. Though I had cancer in only one breast, I have a very strong family history of breast cancer and she also honored and respected my choice to have a bilateral mastectomy. I was 66 years old and just wanted to put the whole question of breast cancer behind me, with the fewest possible complications, while I was still young/strong enough to manage it. I don’t wear any external prostheses; I just go flat. Yes, I get the occasional odd look from strangers, but I know they’re just reacting with surprise and curiosity. I wish you all could have had a surgeon like mine, who would have understood that you know yourselves better than they can ever know you. Blessings and healing to you all…

JoDee Favre
JoDee Favre

June 21, 2018

I loved your story—and your brave decisions. I had bilateral mastectomy 4 years ago. My plastic surgeon did a very good job with reconstruction, but I have been plagued with fatty necrosis necessitating numerous scans and mammograms over the past 3 years, and leaving me with almost constant worry that each new lump could possibly be a recurrence. I naively thought I couldn’t have a recurrence if I had both breasts removed, and only found out after I developed complications that even a single speck of breast tissue left behind can become cancerous . I hadn’t even considered explantation until I read your story. Knowledge is power; and it takes women like you to ensure that we BC survivors are equipped with the information we need to make the right decisions. Brava, my BC sister! I look forward to reading more of your story in the future.

Linda
Linda

June 07, 2018

Thank you for the wonderful post and for everyone’s comments that came after. I needed a mastectomy and all the surgeons I met with looked at me like I was insane for not wanting reconstruction. Ignoring my lifelong instincts of always wanting to leave the world in the same way I came in, I didn’t want anything artificial in me. I hate fillings and even fought not to have markers put into me during the biopsy as insane as that was. I woke up with expanders and it delayed my healing and probably did more damage than was necessary since it went under my muscle. With each expansion, I regret this decision more. Since I was so close to being fully expanded, I didn’t want to turn back but was torn by reading about future MRI’s as well as the need to get a new implant every 10-15 years. This isn’t even including complications. In addition, I now have cording, scar tissue and lots of pain to deal with. All I want to do is heal. After deciding that I can love my asymmetrical body, I was leaning towards removing the expander and going flat. This article helped me realize that it can be the best decision I’m about to make despite all the confusion going on. Thank you ladies for sharing. Gentle hugs to you all.

heather bean
heather bean

March 22, 2018

Wow. I have been reading many women’s stories about explanting on a FB page and this has sure reassured me I would be doing the right thing for me. I had stage 0 DCIS and a bilateral mastectomy with reconstruction in 2013. I had already been through the cancer thing in 1999/2000. I had osteosarcoma with limb salvage surgery of my left leg. And 7 months of chemo. So needless to say I told the doctor to take them both off as I don’t want to ever worry about it coming back again! But now I’m seriously considering the explants. I don’t think my insurance will cover it so I’ll have to save up the money but it needs to be done. I haven’t felt myself since I had it done, no energy, depressed, allergies where I had none before etc. So thank you so much for sharing your story!

Melanie Testa
Melanie Testa

March 04, 2018

I appreciate your telling your story, Samantha. Normalizing the choice to go flat, to undo reconstruction, is important work. I remain grateful to my Self, for knowing from the start, that I could not, and would not reconstruct my body. I remain grateful that I listened to myself, even when the external voices loomed large. Thank you for helping to open discussion on this important topic.

Katharine
Katharine

March 02, 2018

Thank you for sharing your story. I have had my implants for over five years. Many shared sentiments. I am moving closer to explanting-likely this summer.

Melissa
Melissa

February 15, 2018

I am contemplating removing my implants and thank you for sharing this story. Reconstruction is my biggest regret! The pain is constant and it takes such a toll on my emotional healing. The implants are hideous as my surgeon put one infected implant in and multiple surgeries to “fix it”.. We are so much more beautiful than what are often times peoples perception of physical beauty.

Sue Sanders
Sue Sanders

October 27, 2017

Thank you, thank you, thank you Samantha. This has been the answer and validation I have been searching for. It is as though it was written for me. I am 3 years into my BC recovery and am in the early process of seeking a new plastic surgeon to remove my implants. I too have felt the great disservice the medical industry has imposed on women who when faced with the shocking horror of being told you have breast cancer to hurriedly decide what and “how big” you want to be when it’s all over. I don’t know what the answer is but I do know that I have never felt at peace with mine. I shower in the dark, feel all the reported spasms, shooting pains, and pressure in, on and around my entire chest area. And while I try and balance my discomfort and displeasure with the sheer gratitude of being alive, it is hard to not seem like I’m coming across as “wanting” more when so many of our BC sisters have less.
I wish you well in your recovery. Gentle hugs.

Gwen
Gwen

July 26, 2017

Samantha,
Thank you so much for sharing your story, insights, and experience. Doctors and hospitals give you books and pamphlets on all matters “breast cancer”. Nothing that I’ve read has touched me or helped me as much as your post. I’ve been trying all along to take in what others have done, what their outcomes have been, and what they recommend when it comes to reconstruction. You have validated for me that the the only voice I really need to listen to is my own. I only hope that I have the courage to follow through and clean up what breast cancer and life in general have dumped along my path.
Blessings and health to you.

Erica
Erica

July 25, 2017

Thank you for this. I’m 35, married, and had a prophylactic bilateral mastectomy with implant reconstruction in August 2016. In January 2017, I had an exchange surgery to change out my expander for implants. My PS made me bigger than what I had requested. I haven’t felt comfortable in my body since having the expanders or the implants. I’ve scheduled an explant surgery for September and am so excited to get my body back. My husband is happy for me too. He just cares that we can start having adventures again without worrying about whether my chest is going to hurt. I don’t care that I won’t have boobs, I just care that my body represents me and the confidence I have in knowing I’m beautiful regardless of my breast size. That I feel comfortable and can sleep at night. Thank you again for expressing so beautifully why you made the choice you did even though your implants were “perfect”. There needs to be more conversations like this before going into surgery. Best wishes.

G. Nguyen
G. Nguyen

July 24, 2017

What a wonderful story, thanks so much for sharing it with all of us. As a six year survivor of triple negative breast cancer , I chose mastectomy without reconstruction. It was a way to increase my survival odds. Three years after that surgery, I elected to undergo another mastectomy on my unaffected side. This gave me so much more peace of mind and I felt absolutely normal. The unknown question about it always recurring in the other breast due to extreme breast density, drove my decision. It’s amazing how well you can feel after losing the part of yourself that is trying to kill you.

Jill
Jill

February 06, 2017

Oh Samantha, if you read this, thank you for this post. At the moment, I am sitting here 1 week post mastectomy. I was originally planning to have DIEP flap, but the day before (literally) changed the procedure to just have tissue expanders put in as a place holder. Reconstruction hasn’t felt right to me, and I realized I had blindly been following that path. I’m so relieved it was put on hold. You’ve helped me to articulate why I feel confident in saying I do not want to continue moving forward with recon. The doctors I’ve seen have been willing to talk about that, but it’s like I can hear in their voice that they disagree or just don’t understand. It’s also left me wondering why I had to start the conversation with them about going flat instead of it being presented as an option along with implants or my own tissue from the get go. I’d love to hear more about your journey if you’re ever interested in a penpal. Either way, thank you again.

Dianne
Dianne

October 05, 2016

Thank you for telling your story. It will help a lot of people. You look beautiful.

Nancy Tew
Nancy Tew

September 19, 2016

2 years ago on 8th Ocotber 2014 I had a mastectomy on my right side. I was just left with my skin,no tissues or nipple. From day one talking to doctors and plastic surgeons I requested that I do not have a reconstruction. I had read about problems and further surgeries and I didnt want that. being only 48 I was reassured that implants were the way to go. In the end expanders were suggested. I felt a bit happier. When I awoke from my op I was informed that they had put in an implant for me. In the past 2 years I have felt nothing but pain and sadness from what it doesnt feel like like as well as what it looks like. It is a cold brick which doesnt belong to me. In the past few months it has moved and last week I was told it had ruptured and was far too big and tight for my body. Itis 2 sizes bigger than my other breast. They have finally agreed to remove it! I am so happy for for once I am getting what I wanted from day 1. ok it will be flat one side but my normal side is only 34 B so not huge and I will be able to sleep at night and above all happy with myself. yous story is so uplifting and proves that we know what we want when it comes to breast cancer and everything else after it. thank you

Carol
Carol

September 08, 2016

Congrats on your decision. I had br cancer on R side when I was 42,
again on L side when I was 51. In 2012 I had it again, and had no choice (because of previous radiation) but to have a mastectomy. That’s when I chose to have both sides removed.
My sister and I both tested positive for Br C 1. she passed away at age 43 due to Br Cancer.
After I had made decision to have implant surgery, I found out that they cannot do proper exams with implants, particularly physical exams. For 4 yrs I have been flat. No regrets. Feel much safer

Barbara Savage
Barbara Savage

September 08, 2016

Thanks for having the courage to share your personal story. It is truly inspiring. You’re a beautiful radiant shining light! XO

Arianna
Arianna

September 07, 2016

Courageous, beautiful and inspiring. An absolute reflection of Samantha, herself.

Lauren Schultz
Lauren Schultz

September 07, 2016

I was very inspired by your story after my mastectomy I had asked about having a prophylactic however at the time the surgeon didn’t feel it was necessary I wish I had pushed for it. I ended up having a tram flap reconstruction in 2012. This was probably the hugest mistake I could ever make. Not only do I still have pain 4 years later but I despise my tram flap and I want it gone. Unlike removing implants this is a little more involved. I feel horrible in my own body and I am constantly in pain. I wish I could go back and undo it and just live flat. I believe I did it out of pressure to have reconstruction for everyone else except myself.

Lynn
Lynn

September 07, 2016

Beautiful story. I also explanted and found great freedom in it.

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