***This was originally posted as a blog entry on April 4th, 2012***
Why? Why would I have a mastectomy, as a perfectly healthy 21-year-old?
I’ve been avoiding this post for a while–not because I didn’t want to answer the question, but because I didn’t know where it would belong. It seems like something I should have written about a long time ago, before my surgery. And I did write about it, for myself, to justify the decision. But now I want to “go public” with my thought process, because people are right: removing all of my breast tissue at a young age is absolutely ludicrous.
This time last year I was driving home from work, anxiously awaiting the debauchery that would be the following evening: my 21st birthday. At that moment, I was just a normal college student. I was so excited to finally be free of my crappy fake ID, but before that magical first legal drink, I would have to make sure my camera was charged, my hair was straight, and my clutch was packed with the necessary lip glosses and eyeliners.
Six months later, everything was different. I felt nothing like that girl who was excited to go out to bars with her sorority sisters to celebrate another year. My BRCA test results were in, and it seemed that I would never be the same again.
I was suddenly resentful of my body. I felt so betrayed! My relationship with my body had never been perfect; there were certainly a wonky few years during high school. But since starting college, I’d finally become comfortable being me. And then, when things seemed to be going great in life, my body just threw me under the bus. “Oh hey! You’re gonna get cancer!” No, I guess it wasn’t my body–it was my DNA. That’s what made it even worse, at least at the time: the very essence of my being was flawed.
No one could see that I was broken, but I knew it. I just didn’t know when it (cancer) was going to strike. My breasts were–you guessed it–ticking time bombs (oh so that’s where the name comes from!) Every time I caught a glimpse of them in the mirror while changing, I shuddered. I hated them. I didn’t trust them. What if there was a cancerous cell lurking in them already?
The BRCA test results felt like a death sentence. But maybe that’s the wrong way to describe it…I never thought I was going to die…but I never thought I was going to live, either–at least not happily and cancer-free. It was a death sentence for my normal, relatively simple life. It was a sentence for cancer. I read up on the numbers, and I knew how BRCA had played out in my own life: my mom had been diagnosed with breast cancer twice. The fact that I, too, was BRCA positive meant that I was going to get cancer. There wasn’t hope that it would skip me or that I could diet and exercise my way out of it. No. If I lived long enough and had enough breast tissue, I was going to get breast cancer.
These two thoughts–resentment toward my body and belief that I would eventually have cancer–were what drove me to my decision to have a prophylactic mastectomy.
I really hate being depressed. I hate hating myself. I wanted, so badly, to get back on track with my self-esteem and self-image. You can only truly love someone if you love yourself first, and I really hated myself last October when I found out about my BRCA mutation. Imagine how poor Bryce [my boyfriend] felt?
It’s true that I could have waited one year, five years, ten years–any period of time, perhaps–before having a mastectomy. And I think that if I had waited a few years, I still would have been doing it by choice, not by necessity. But I know that I would have felt so much self-loathing during that time. I was not prepared for those feelings. The drama of my teenage insecurities was hard enough; I did not want to repeat any of that. The sooner I got on with my mastectomy, the sooner I would have reconstruction. The sooner I would have reconstruction, the sooner I would love my breasts–and myself–again.
A mastectomy and reconstruction would give back what the BRCA mutation had taken: my self-esteem. But it would also give me peace of mind. Many women who are at high-risk for breast cancer opt for the surveillance option instead of surgery. They are diligent about their mammograms, MRIs, and breast exams and join special hospital programs for high-risk women.
This was certainly a choice I could have made, but it was too passive. Yes, I could screen the heck out of my breasts, but that wouldn’t stop a tumor from forming. And let me tell you: I’m a worrier. If something hurts (my eyes, my ears, the space between my toes), I go to the webMD Symptom Checker and diagnose myself (and it’s always terminal). Imagine me at a yearly MRI or mammogram? I just know I would be freaked out for days waiting for the results.
And the way I saw it–again, based on the numbers–was that eventually one of those MRIs or mammograms would come back with a spot. I would get the spot biopsied, and then a doctor would tell me that I have cancer. The doctor, knowing that I have a BRCA mutation, would then strongly suggest a double mastectomy, followed by chemotherapy and maybe radiation.
I would not get to pick when this happened. Cancer would not care if I had a career and children to think of; it would just strike. I would have to halt my life for surgery and a very difficult treatment; I would have to explain to my family what was wrong with me. My mom didn’t get to pick when she was diagnosed with breast cancer. It just happened to her, and at a really sucky time.
When I found out that I had a BRCA mutation, I was given a choice–the choice my mother never had. I could choose when my life would be inconvenienced. I could decide if I wanted it to be because of cancer, or because of me. I decided to stop my life for a few weeks because of me–because of a decision I made myself. If I had decided against a prophylactic mastectomy, I would have to have one at some point, anyway…and it wouldn’t be prophylactic anymore. It would be because I had breast cancer.
My brother Michael put it best in an email to me a few days before my surgery: “Doing this [a mastectomy], or not doing this, are each big decisions. One choice is potentially fatal, and one is just fucked up. You chose fucked up, which is clearly the right choice.”
He’s right. It is “fucked up.” It’s ridiculous. It’s upsetting. I was distraught for weeks before my mastectomy, and sometimes now, even after, I get angry and sad and insecure. But it was the right choice. I didn’t cause the stop codon that screwed up my BRCA2 gene. Nothing I ate, drank, said, watched or smelled affected it in any way; it just happened. I couldn’t control it. But now I am in control of my body and health again, and I have my prophylactic mastectomy to thank for that.
I know blogs are supposed to be concise…and that certainly wasn’t. But I hope it made sense. I hope that at least one person out there understands my decision a bit more…I hope it doesn’t seem so crazy and extreme.
Tomorrow’s my 22nd birthday, and I’ve given myself the gift of life! So cheesy, and so true.
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My names Lucy and I live in North West England and I’m 21. I don’t think your crazy at all. My mother was diagnosed with Breast Cancer in her 30 and she died when I was 4. Getting breast cancer scares me so much I have recently found out about Mastectomy and as soon as saw it a smile came and realised I am not doomed. Going for gene testing this Aug but because there is no surviving relative with the gene I don’t no how acurate the results will be, but regardless of what the results are I really want the Mastectomy but being so young its hard to make your GP take you serious. I really really can relate to your story in so many ways.
How did you make your GP take you seriously? & not be fobbed off with going to breast care cilincs regullary. How long after you gene testing did you have your Mastectomy?
Thanks for your story your right theres not another one online, I was starting to think I would have to wait till in my 30’s, but want to start living now instead of worrying all the time. Thankyou
Hi Lucy, thanks for leaving a comment. First off I’m so sorry about your mom.
I don’t think it should be a problem for you to get tested for the gene without first knowing if it’s present in your family. My mom was tested in September and they didn’t have a specific mutation they were looking for, just one in general. Once they isolated it and figured out what her mutation was, they tested me ONLY for that one…but every family that goes through genetic testing has to start somewhere.
To be honest with you, all of the members of my medical team are VERY young (at least compared to other doctors!) They were all very open to my choice of a mastectomy…of course they would have supported me either way, but I think they understand my point of view a lot more because they are young also.
I received my positive BRCA test results on October 25, 2011 and had my mastectomy on March 13, 2012.
Please feel free to email me if you want to talk more. My new blog email address is email@example.com
WOW i cant believe i found this blog of yours i was so relieved, because i thought i was the only one who was young and went through with the surgery but now that i found you lol i know im not alone let me introduce myself 😉 my name is vanessa im 21yrs old and i also am a brca carrier i got brca1 and when i found out i was brca positive i had the same reaction you did. I FREAKED i just knew i would do anything to prevent getting breast cancer. so i also had prophlactic mastectomy but with immediate implants so i guess i consider myself lucky not going through expanders. I love ur blog and i think your so brave to put pictures im terrified to show anybody my reconstructed breasts even though they look quite good besides the scar. id like to know what type of implants your going to choose that was a hard decision for me. well cant wait to hear from you 🙂
Hi Vanessa–thanks for commenting, I’m so glad you found me!
Sometimes I think I’m crazy for putting up all of these pics, lol! Then I remember that for me at least it would so much harder to hide it all…if I’m really open about it, no one can give me shit, you know? =P
I am going with silicone implants, per my plastic surgeon’s recommendation. What kind of implants did you get?
Thank you for responding and I have silicone 700 cc they are a I fit in c or d cup bras both fit I want bigger I’m thinking about 800 cc for a full d but im not sure if I want to go under the knife again 😉 but I love silicone they feel so natural I show them off with low cut shirts lol just not nude 😉 Im embarrassed about the scars but my bf don’t care at all in the one who freaks without a bra hehe anyways I’m glad you put this blog your going to be a great resource and inspiration to a lot of brca carriers and other women undergoing a mastectomy. I’ll answer yours or anybody’s questions.my surgery was 2/20/12 I had bilateral prophylactic mastectomy nipple sparring but unfortunately nipples didn’t survive so nipples are getting reconstructed soon 6/15 unless I decide to go bigger 😉 well good luck and god bless
How did I not know there was an entire group of people like me who chose prophylactic double mastectomy over a timebomb? Thank you for your stories and encouragement! I had 2 different types of pre-cancerous nodules, 1 in each breast. I couldn’t have a breast MRI because I have brain aneurysm clips. My oncologist & PS & I decided on the prophylactic nipple sparing double mastectomy straight to reconstruction. After necrosis & infection, I had to have my implants and nipples removed. I go back in for surgery in 3 weeks to get the expanders put in and scar revision.
Thanks for letting me know that I’m not alone and that even though things didn’t go as planned, I’m still ok and I am a Previvor!
I’m SO glad you found my blog–you are definitely not alone. I’m sorry to hear you’ve had some hiccups along the way, but it’s good that things are getting back on track. I too had an infection that halted progress for three months, but in retrospect, it was all still worth it.
I’m a member of a number of Facebook groups for Previvors. Please send me an email (firstname.lastname@example.org) if you’d like to join them!
Hello Rachel its Vanessa from the earlier comment above. Its been long since ive checked your blog and im glad i did, i feel like were in the same boat. My first surgery was 2/2012 and i got 700cc silicones ive always complained that my left boob was bigger than the right and its funny because naturally my right was bigger. Well one year later left boob looks perfect just how i imagined it be ..but my right was still small and dented so on 2/25/2013 my doctor finally like finally after one year complaining to my doc that one is bigger than the other lol he exchanged my small (right) boob to a 800cc natrelle silicone.Yay their even now! they feel the same size even though their not. And the scar on left side is healed looks good after 1year of mederma scar cream and the nipple is perfect considering left nipple is made from my areola its in the middle just waiting for the tattoo. Now in healing process for the right boob the nipple is too high but its my real nipple so i hope like you that over time it gets better but feeling great just waiting for my right to look like the left haha crossing fingers for both of us to get the perfect reconstructed boobies. I dont have the fear and anxiety when i found out i was a brca1 carrier now i am relieved peace of mind. email me anytime if you have any questions
Oh wow I am so glad I found this site . I am brca1 and 2 positive. I had the test done when I was 16 cause of strong history of both ovarian and breast cancer and I had endometrosis and fibrocystic breast disease. I am now 21 years old and after worryin myself for 5 years freaking out every month I went for a check and every 6 months I went for mammogram I finally said no more and had a prophylactic double mastectomy on 2/4/2013 with no reconstruction . I also am going to meet with a doctor on march 8th to discuss hysterectomy . I kno I am a young age for it but my aunt died of ovarian cancer when she was 30 so I don’t wanna wait that long and they were considering it for the endometrosis anyways. I didn’t think anyone else my age was going thru this at all . I joined bright pink to try try to find a pinkpal who had gone thru the same and no luck there. I am so new to all this after surgery and am still in depression and shock over my body and feel like everyone looks at me like I’m crazy when I tell them what I want to do an what I’ve done . I’m glad I’m not the only one who did the fucked up choice instead of the fatal option . I loved reading your blog and about your experience mine was very similiar .
Hi Tara! I’m so glad you found my blog. I hate the idea that anyone would go through this feeling alone or judged by people. Please send me an email: email@example.com I’d love to talk to you more and also invite you to join a support group on Facebook specifically for young, high-risk woman who elect to have preventative surgery.
OMGosh. Your words are amazing, I’m so glad I found your blog. I am BRCA1 positive. I found out in Aug. 2012. My mom had BC when she was 28 years old. We never really thought about getting tested to see if it was genetic until my sister found a lump in her breast. She went and saw a breast surgeon (knowing that my mom, grandma, and great grandma all had BC) he wanted her to get tested to see if it actually was genetic. So she did, She found out that she did not have the BRCA mutation (thank god). Then I got tested, and unfortunately it turned out that I carry the BRCA1 mutation. I was in shock. I didn’t know what to think. After they went over all the options that I had, I knew that I wanted the prophylactic mastectomy. That way that I could plan my life around when I wanted to have it, not when cancer made me have it. So on March 25th, 2013 I had a prophylactic bilateral mastectomy with reconstitution (I decided to get the tissue expander first!). I’m still currently recovering from the surgery, and every week I have to go to the doctor to get more saline in my expander. I never doubted my decision once, it was the right thing for me. Thank you sooo much for sharing your story.
Kallen, I’m so glad you commented!
I’m so sorry about your BRCA mutation but I’m very happy you went ahead and did the prophylactic surgery. Please send me an email if you want to chat about it more: firstname.lastname@example.org I belong to a Facebook group called Young Previvors–I’d love for you to join.
Hi, my names Amy. I’m 22 from Bedfordshire, England.
I’m so glad I’ve stumbled across your blog. My nan had breast cancer and ovarian cancer, my mums had breast cancer which she then found out she had the BRCA2 gene and so did my nan. She then had her ovaries out to lower the risk. So I’ve always known about it and have always kind of assumed I will have it too.
I’ve spent 18months in hospital after being diagnosed with crohns, the treatment I am on for that has a risk of developing lymphoma so they put me forward for being tested. I had my first meeting yesterday with the genetics counsellor. She told me that even if I do have the gene that nothing will be done until I’m 30. Because it’s highly unlikely for me to get it before. I’ve always had set in my mind that if it’s positive I’ll have a double mastectomy to lower the risk. And then once I’ve had kids I’ll have my ovaries removed too. I’m so glad I’ve read your story of preventative surgery. If it turns out I do have the gene I’m gonna press for this. Like you say it’s a ticking time bomb. And catching it a day late could be the difference between life and death.
Thanks for posting this and for creating this blog. There are so few women talking about this and I’m freaking out.