Bye Bye Boobies: Two Years Later

Today marks the two-year anniversary of my prophylactic double mastectomy at 21 years old. Last year I had a lot to say about my one-year anniversary; this year, I’m going to let photos do the talking.

Let these photos–organized in chronological order starting with March 13, 2012 and ending with last night–serve as evidence that my life has been full, happy, and pretty much awesome since my mastectomy. If you’re considering a mastectomy or you’re in the middle of breast reconstruction right now, I hope these photos  give you confidence and encouragement for your own journey.

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Dating After a Mastectomy: DOs and DON’Ts, part two

Welcome to the second installment of Rachel Joy Horn’s tried-and-true-and-possibly-resulting-in-a second-dinner-invitation DOs and DON’Ts of dating post-mastectomy. Since writing my first post in November, I am still single. So maybe I have no clue what the hell I’m talking about.

A perk of being single is bringing my best friend to the company holiday party.

At least I had a really sexy date to the company holiday party…my best friend Jennifer.

Moving on…let’s start with a don’t:

DON’T get into the nitty gritty details of your BRCA mutation, of your surgery, of your breast reconstruction—whatever it is you’re discussing. I’m not encouraging you to avoid it and I’m certainly not asking you to lie, but there are some details you can share, and there are some that you might consider keeping between yourself, your family and your doctors.

If a guy wants to know about my BRCA mutation, I give him a quick overview of how I came to be tested for the mutation. I don’t focus on the exact meaning of a BRCA2 6056delC mutation (which I’d be lying if I said I fully understand), nor do I obsess over the statistics associated with a BRCA mutation. Instead, I try to deliver the details that make the most sense to understanding why I’d elect to have a prophylactic mastectomy.

When it comes to talking about the actual mastectomy surgery, I start with a basic “I replaced the stuffing on my boobs.” I then elaborate with a much more scientifically backed “I took out the potentially bad tissue and replaced it with implants.” (I think that’s what they write in the medical journals, right?) I avoid discussing the thrilling experience of emptying the bloody goo out of my Jackson Pratt drains, the pathetic feeling of not being able to lift myself up out of bed to shuffle to the bathroom, and the crippling fear of “Oh my god, are my nipples going to make it out of this alive?!”

As one might expect, the breast implants are what usually interest guys the most. Often they assume that I could pick any implant size I want, so I politely correct them (read: laugh in their face–hahaha, you dumb fool!) and let them know that there is a sort of science involved with selecting, based on factors such as a woman’s natural breast size and chest width. They then usually want to know if I “upgraded,” so to speak, at which point I say that I wear about the same bra size I did before my mastectomy.

And this is what a silicone implant looks like.

Ooo, implant. Squishy squishy.

Most of my concerns about oversharing stem from not wanting a guy to think I’m fragile or broken in some sort of way. I also worry about encountering queasy types; call me old school, but I wouldn’t want a date to pass out in the middle of appetizers. So instead of getting too detailed, I make an effort to highlight certain information about my surgery:

DO stress the positives. The biggest and most obvious positive is of course the dramatic reduction in breast cancer risk. But in my experience, there have been additional perks (bahaha pun) to the mastectomy and breast reconstruction.

Before my mastectomy, my wardrobe decisions were dictated by an evil overlord known as The Bra. Support was the name of the game, and if an outfit couldn’t be worn with a bra, it wouldn’t be worn at all. I was often forced to pass up halter tops and strapless dresses, or worse: I’d have to decide between chunky bra straps sticking out of a backless dress, or concealing all of it with a sweater. Talk about a Sophie’s Choice. These days, I can wear backless dresses and halter tops like it’s nobody’s business. My wallet sobs, but my wardrobe has never been happier.

Look Ma, no bra straps!

Look Ma, no bra straps!

If a guy has a sense of humor, I don’t hesitate to bring up the tummy tuck possibility. Using my mom’s mastectomy and breast reconstruction as an example, I talk about how, if I gain enough weight in the future, I could replace my breast implants with stomach fat. This is definitely a glamorization of a DIEP/TRAM flap procedure, and I don’t mention the arduous recovery process, which I saw firsthand with my mom, but hey—it could be seen as a positive. My mom is living proof of this, what with her new boobs and flat tummy. Where I notice a guy losing interest is when I mention “having fifteen kids and completely letting myself go so I gain enough weight to have big ol’ jugs.” Apparently guys don’t like that? Who knew?

Geez, Mom, put those things away before you take someone's eye out.

Geez, Mom, put those things away before you take someone’s eye out.

My final perk is, you might have guessed, visiting the Playboy Mansion. (It seems I rely on this topic a lot when dating…thanks, Trisha.) It certainly is a rare experience, and I’ve found that for some odd reason, men have a lot of respect for Hugh Hefner. I’m not sure why. Now unless you’re all holding out on me and you’ve been visiting El Mansion with your glorious implants, too, I’m going to assume that we don’t have that story in common. But that doesn’t mean your mastectomy hasn’t come with any unexpected perks. Were you interviewed by a news station and you’ve achieved a degree of local celebrity? Did you get a kick-ass new tattoo in honor of your surgery? There might be a silver lining to share after all.

Welp, it’s late and I’m tired, so I think I’ll sign off now. Must log into Tinder and remind myself why being single might actually be a good thing. #guysinLA #areallactors #wouldyouliketoseemyheadshot #crazycatlady?

Dating After a Mastectomy: DOs and DON’Ts

So, Bryce and I broke up. Eight months ago. It didn’t seem like particularly crucial information to anyone’s life so I didn’t feel the need to shout it from the rooftops (and by that I mean, post about it on the Interwebz). But lately I’ve received questions from other women about dating after a mastectomy, so it’s time to come clean about the break up.

Now, before I regale you with my dating experiences as of late, I want to make sure all of you ladies out there know that Bryce and I did NOT break up because of my mastectomy, my breast reconstruction, or my BRCA mutation. In fact, Bryce was 100% supportive throughout the entire process and showed a great deal of maturity, for which I’ll always be grateful. We broke up because at 22 years old, two+ years with the same person feels like a lifetime.

Sometimes I miss that Abe Lincoln lookalike, it’s true. And I definitely miss his puggle Hendrix. But I have, for the most part, been enjoying the single life. And it does make for some interesting reading material for the ol’ blog. So in order to report back to my loyal readers and answer your question “How do you tell someone you’re dating about your mastectomy/implants/BRCA mutation?”, I’ve been doing some research. And I’ve learned some DOs and DON’Ts of dating post-mastectomy. Over the next few months, I’ll be posting my findings…starting with:

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DON’T ask a your date if he or she has Google stalked you. Just don’t. I met a guy at a web developer meetup event, and we went out a few times. During one date, I decided I would tell him about my BRCA mutation and mastectomy, and since he was a computer programmer and had previously told me to check out his personal website, I assumed it was safe to ask him if he’d seen mine. In my head, this is how I imagined the conversation would play out:

  • Rachel: “So, did you Google me and find my blog?”
  • Guy: “Why yes, yes I did.”
  • Rachel: “And what did you think?”
  • Guy: “I thought your decision was brave and understandable. You are very smart and wise. I am in awe of your courage and good looks. Also, your writing is hilarious and the simple WordPress.com layout on your blog is not at all outdated. I would like you to meet my rich great aunt who owns the largest book publisher in the world. Oh and would you like to get married?”
  • Rachel: “OH…um…okay…”

The actual conversation went a bit differently:

  • Rachel: “So, did you Google me and find my blog?”
  • Guy: (confused) “…No…”
  • Rachel: (not convinced) “Are you SURE?”
  • Guy: “…I didn’t see it…” (Probably thinking to himself: Oh my god what is her blog about? Is she a serial killer? Porn star? Cult member?)
  • Rachel: “OH…um…okay…well it’s about breast cancer and stuff…”
  • Guy: (Runs away, screaming.)

OK, so he didn’t really run away screaming, but the horrified look on his face made it pretty obvious that I had made a fatal boo boo. Since I write this blog and I’ve received press coverage for it, I assumed that the guy–being well versed in the ways of the Internet–had already run a Google search of my name and had come across the blog and articles about me. I thought it would be an easy way to cheat and deal with the subject without having to explain it myself.

I was obviously wrong. I still had to explain it all to him–the BRCA mutation, the family history of breast cancer, the mastectomy, the implants–but I had to do it while fighting to convince him that I wasn’t hiding something really bad. Oh well. Lesson learned. Instead of asking guys if they’ve Google stalked me, I now try another tactic:

DO look for ways for your date to indirectly mention it (BRCA mutation, mastectomy, whatever “it” is) without knowing…I call these “topic triggers.” A few weeks after the failed date (which was also my LAST with said guy…hmm, I wonder why?) I went out with another guy, who I had met online. In my dating profile, I mentioned that I blog (in addition to other exhilarating hobbies, such as scrapbooking, playing with my cat, and being a grandma). A fellow writer, he was curious about my blog.

I explained to him that my blog is about hereditary breast cancer and preventative surgeries, a seemingly niche topic with a surprisingly big audience online. I mentioned that yes, I had undergone a prophylactic mastectomy and now had breast implants, but most of the conversation was focused on the blog and the actual writing of it. It ended up being a very valuable conversation for me, because he helped me sort through some issues I’ve been having as a writer.

It baffles me that I'm still single.


With a witty OKCupid profile like this, it’s a wonder I’m still single.

This tactic of subtly sneaking topic triggers into the conversation has worked well for me multiple times. For example, I’ve used my visits to the Playboy Mansion as a segue to my BRCA mutation and mastectomy. Guys are usually so excited that I’ve met Hugh Hefner that they don’t get freaked out by the big scary mastectomy topic.

Now I realize that not all of you run your mouth on a WordPress blog or frequent the Playboy Mansion, but there are other ways to sneak in topic triggers. Do you volunteer with any high-risk breast cancer groups or participate in charity walks for breast cancer? Those are hobbies to discuss. Maybe you’ve taken some time off from work for your surgeries and you’re preparing to go back? Talk about your return to the office.

If you try this and it backfires horribly…well…sorry. 5-carat diamond engagement rings are not guaranteed with this method. But stay tuned for more DOs and DON’Ts, and maybe you’ll find a gem after all.

“I could have sworn she had boobs!”

Last night I had a very unusual, albeit humorous encounter with a coworker.

Here is some background on the incident: My company moved offices this week, from our location on Third Street Promenade in Santa Monica to a larger space a few miles away. To help us properly bid farewell to our old home, the company hosted a karaoke party at one of our favorite locales, the King’s Head. There was liquor involved.

In general, most of my coworkers know about my mastectomy and reconstruction. Last year I shared a bit about it during a “Think Pink” party, a fundraiser for a breast cancer charity walk the company sponsored. And a few months ago in a team meeting I gave an instructional presentation about running a blog, which focused on how exactly I run this blog. I made the conscious decision before my mastectomy to tell people about it, coworkers included, and they’ve all been extremely supportive and flexible, for which I am grateful.

When a coworker approached me at the bar yesterday and sheepishly mumbled “I have to tell you something,” I didn’t know what to expect. We do not work together closely, and I don’t know him particularly well, but we had talked the week before at a party, so I assumed it was related to that.

“I saw you on HuffPo Live,” he confessed. I was not expecting to hear that. Two days after Angelina Jolie’s announcement in the New York Times, I participated in a segment on HuffPost Live about my decision to have a prophylactic double mastectomy.

“Were you browsing yourself or did you see a tweet about it?” I asked.

“No, I go on the Huffington Post all the time. I saw something about Angelina Jolie and then clicked and said…’Whoa! I know her!’ and it was you!”

And now for the kicker:

“I was watching it and I stopped for a moment and thought, I could have sworn she had boobs! Last time I saw her, she definitely had boobs…And I looked around behind me but no one else was around the office but I wanted to ask them, ‘Doesn’t she have boobs?'”

I lost it. I started cracking up. After howling for a bit, I explained to him that I’ve really “always had boobs” and that I just “replaced the stuffing inside.” And I also said that my plastic surgeon obviously did a good job because he wouldn’t have known had he not watched the HuffPost Live segment.

I must applaud his courage to approach me about it. It was certainly an unusual way, but hey, why not? I’m glad he did.

But on that note, I am finally posting the links to all of the interviews I did following Angelina Jolie’s prophylactic mastectomy announcement. The morning after AJ’s New York Times column went live, I received a very early phone call from a sorority sister at ABC News, asking to interview me for a story. A few minutes later, I spoke on the phone with a woman at the UK’s Daily Mail. Then later that morning I saw an email from a friend in Germany who had written an excerpt for a newspaper about me.

The days following AJ’s announcement were pretty crazy for me. I received an enormous amount of traffic to the blog and quite a few media inquiries. Here’s a round-up of all of the publicity:

It was pretty freakin’ sweet. The on-air interview for Australia’s Weekend Sunrise was interesting; I was at the Beverly Hills studio at 3 pm on Friday, streaming live to Australia, where it was already Saturday morning. Here are a few pics:

Here I am waiting to stream into Weekend Sunrise. Notice the great "view" of Los Angeles behind me.

Here I am waiting to stream into Weekend Sunrise. Notice the great “view” of Los Angeles behind me.

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And here’s a pic a coworker snagged of me during my HuffPost Live interview, which she tweeted. I promise I was not bored, just intently listening!

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Two big wins for the high-risk breast cancer community

First, Facebook clarified their stance (link NSFW) on mastectomy photos:

“We have long allowed mastectomy photos to be shared on Facebook, as well as educational and scientific photos of the human body and photos of women breastfeeding,” Facebook said in a prepared statement. “We only review or remove photos after they have been reported to us by people who see the images in their News Feeds or otherwise discover them. On occasion, we may remove a photo showing mastectomy scarring either by mistake, as our teams review millions of pieces of content daily, or because a photo has violated our terms for other reasons. As a reminder, our terms stipulate that we generally do not allow nudity, with some exceptions as laid out above and here, consistent with other platforms that have many young users.”

This is great news for everyone in organized Facebook groups such as Young Previvors, the group I have come to regard as my safe haven throughout (and even after) my surgeries. One of the most valuable aspects of these communities is being able to see what to expect following surgery, and it’s wonderful that women–some of whom would otherwise have no access to post-mastectomy photos–can share with each other as a means of support.

And in other big news, today the United States Supreme Court ruled against the patenting of human genes in the case Association for Molecular Pathology v. Myriad Genetics, Inc.

From the SCOTUS blog: “The Court held that a naturally occurring DNA segment is a product of nature and not patent eligible merely because it has been isolated, but manmade cDNA is patent eligible because it is not naturally occurring. The case involved the well-known BRCA1 and BRCA2 genes, which can involve mutations that increase the likelihood of breast cancer.  The ruling is significant for a variety of companies (including Myriad) that hold important DNA patents.”

This decision will result in lower costs for testing for gene mutations such as BRCA1 and BRCA2, making it much easier for women (and men!) to access the test. It will also mean more money and motivation for research.

I’m a happy camper!

I had a mastectomy before it was cool…#hipstersofmastectomies @AngelinaJolie

My Medical Choice by Angelina Jolie

Last night, actress Angelina Jolie went public in the New York Times with her decision to undergo a prophylactic mastectomy. She revealed she carries a BRCA1 mutation, and that her mother passed away from cancer at the age of 56.

In her piece, Angelina writes about her children wanting to know if she would succumb to the same fate as her mother. She talks about the cancer risk associated with her BRCA mutation and the various steps of the surgery. These sentiments are all familiar to any woman who carries a hereditary breast and ovarian cancer risk, but what resonated with me the most in her writing was this:

But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

Thank you, Angelina, for sharing your story. Every time a woman is brave enough to open up about her experience with hereditary cancer–from Angelina Jolie to Giuliana Rancic to Christina Applegate to my dear friend Trisha to ME!–there is limitless potential for making a difference. How many women will opt for BRCA testing because of Angelina Jolie? How many high-risk women will be more inclined to consider preventative surgery? Even if just one woman takes action, Angelina Jolie’s revelation will be worth it.

You go, girl. Thank you for joining the ranks of selfess women who have opened up about their mastectomies.

A reflection on Mother’s Day

I woke up this morning thinking about my mom and everything she’s given to me. She gave me heart-shaped chocolate cakes every year on my birthday. She gave me hand-sewn Halloween costumes, from the Little Mermaid to Marilyn Monroe. She gave me Harry Potter books, shipped to me at summer camp on the day they came out.

She gave me a love for painting and a thirst for writing. She gave me the drive to make everything I do just a bit more special. She gave me confidence.

She gave me blue eyes. She gave me hips. She gave me big feet.

She gave me a BRCA gene mutation.

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“I have always wanted to give you everything and it makes me sick that i gave you something so awful without even knowing it. i love u babe.”

That was the text my mom sent me on October 25, 2011, after I told her over the phone that I had tested positive for the BRCA mutation. We had gone out to lunch earlier that day; I knew the results during lunch, but I couldn’t muster the courage to tell her. So I waited until that evening.

I guess she was right; she did give me “something so awful.” But she didn’t intentionally give it to me…she didn’t handpick my genes. It just happened.

And you know what? Whatever. It’s awful, she’s right, but in a way…it’s not.

She gave me a BRCA gene mutation, because one of her parents gave it to her. But by testing for the mutation and sharing her results with me, she gave me an extra shot at life, too.

Without her positive test result, I would have never heard of the BRCA genes, and I would have never been tested. What could that have meant for me in the future? Well, my mother has had breast cancer twice because of her BRCA mutation, so you do the math.

She gave me a BRCA gene mutation, but she also gave me the ability to control something about my future.

It’s Mother’s Day, and I feel fortunate to have such a wonderful mother. I love to see the universal appreciation for moms. Moms are awesome.

I hope that no other BRCA-positive (or genetic mutation-positive) mothers ever feel guilty the way my mom did when she found out about my mutation. It was heartbreaking to read that text, to know that my mom felt as if she had done something to hurt me. My mom has given me and continues to give me so much–surely this one hiccup could do nothing to diminish a lifetime of love.

Happy Mother’s Day, everyone.

Working for a living, living for a cause

I write this blog post as a very proud daughter and as a very excited member of the breast cancer prevention community. I’m so pleased to share with you the good news that my mother, Shirley Horn, is the new Director of Marketing & Communications for the Dr. Susan Love Research Foundation.

Shirley Horn

Founded in 1983, the Foundation’s “groundbreaking research is focused on finding the cause of breast cancer and stopping it before it starts.” When my mom was diagnosed with breast cancer for the first time in 1999, Dr. Susan Love’s Breast Book was a key resource to navigating the difficult road to recovery. The book is now in its fifth edition, a testament to its value to the breast cancer community.

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The Santa Monica-based Foundation is a small group of people dedicated to supporting breast cancer research. Its Army of Women program boasts over 371,000 women to participate in cancer-related clinical research, and its Health of Women study is an actively-growing online medical research study.

When breast cancer reared its ugly head again in 2011 with her second diagnosis and the news of our BRCA gene mutation, my mom felt empowered to take a stand. This is the perfect opportunity for her. She writes: “In my new role, I’ll be spreading the word about this amazing organization and the visionary Dr. Susan Love, promoting participation in the Army of Women and Health of Women study, and seeking high-profile marketing partners to help the Foundation further its mission.” I am thrilled that she will be able to contribute to the fight about breast cancer.

Please join me in congratulating my mom on this stellar achievement by signing up for the Army of Women and the Health of Women study. When you join the Army of Women, you will gain access to information about all sorts of breast cancer-related research studies, such as a study about the effects of certain types of birth control on breast tissue. And the Health of Women study consists of a series of questionnaires that are completed entirely online. You don’t have to have a personal or family history of breast cancer to participate in either effort, and heck–you don’t even have to be a woman! So why wouldn’t you join?

Congratulations, Mom, on your wonderful new position. I can’t wait to see the difference you make.

 

Bye Bye Boobies: One year later

One year ago today I was lying in a hospital bed at UCLA Ronald Reagan Medical Center, extremely groggy and extremely happy. Part of it was from the pain medication, I’ll admit, but most of that happiness was caused by an overwhelming sense of relief.

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Some women wait years between testing positive for a BRCA mutation and having a prophylactic mastectomy. I waited 140 days. 140 days of discontent. 140 days of suspicion. 140 days of self-loathing. 140 days of feeling like a stranger in my own body.

I went into my mastectomy on the morning of March 13, 2012 with anxiety and excitement, not knowing what would come next. I woke up in the afternoon without my breasts, but with the wonderful feeling of peace. A weight had been lifted: I wouldn’t have to think about breast cancer all the time, and I could get back to loving myself again.

One year later, I can say with confidence that I am once again glad to be me, Rachel Joy Horn. I don’t feel broken anymore, and I’m not living in fear of my body.

It’s been an interesting year, but looking back on it, certain moments that at the time felt awful were just hiccups along the way. Those Jackson-Pratt drains were horrendous, they really were–but whatever. My family didn’t care about them. My boyfriend didn’t mind them. My friends didn’t think they were weird. Despite them being a huge inconvenience to dressing like a normal human being, they didn’t stop me from having fun and being social.

At the time it was playing out, it felt as if the cellulitis infection and subsequent tissue expander removal would ruin my life. I literally sat in the hospital bed, Googling freezing-cold places I could escape to so I would never have to be seen in a swimsuit. But then I found a cotton prosthesis, and my mom made me a kick-ass mastectomy bikini with a waterproof falsie. And so I had One Ugly Summer…One Fun, Sunny, Active, Flat-Chested-on-the-Left-Side Ugly Summer.

One Ugly Summer…

Over the last year, I’ve learned that I have horrible veins and that I have fabulous friends. I’ve discovered that narcotics can give you migraines and that social networking can give you an incredible support community. I’ve realized that talking to doctors is crucial, just as talking to strangers is–you never know who understands and how they can help.

Sometimes I miss my breasts, or more specifically, my breast tissue. It’s a rare moment that I get jealous of another girl’s rack, but it happens. (I’m looking at you, Sports Illustrated cover Kate Upton.) My new boobs are not perfect…but then again, neither were my old ones. They are, however, mine, all 800 ccs and 14.2 cm of them, and they fit me. There are even glorious times when I think that I am the luckiest girl in the world for having them, like when I can wear a backless dress without a bra and not worry about sagging.

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Okay, so I’ve never actually worn this dress…but just knowing that I CAN wear it is what matters.

For all of the women going through breast reconstruction right now, I ask you to please be patient. I know that it can seem very disheartening, what with all the scars and the weird shapes and the rippling. But things will look better, just wait…and maybe ask your plastic surgeon about some nipping and tucking.

To my friends and family, thank you for the flowers, the pillows, the sweet treats, the fuzzy elephants, the magazines, the nail polish, the phone calls, the text messages, the cards, the hospital visits…the love.

To acquaintances who have reached out to me with words of support and encouragement, thank you for your courage to speak up.

To my work colleagues, thank you for understanding my circumstances and for accommodating me with such graciousness.

To the wonderful ladies online going through something similar, thank you for your bravery and for your willingness to share your experiences to help me and others like me.

One year has gone by so fast, and I know part of that is thanks to all of you. Before I know it, I’ll have had my implants for ten years and it’ll be time to replace them. But let’s not rush that. =)

 

Feeling downtrodden today, but I need your help to get back up!

My mom is a member of the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. She has been paddling with the Pinks for about a year now. Last night, one of her teammates passed away after a long battle with breast cancer. Frances was my mom’s benchmate on the boat. On the Pink Dragons’ Facebook page, Mom writes: “Frances, your courage and determination was an inspiration to all of us. Your teammates will miss you so. Rest in peace, dear friend.

Then scrolling down through my Facebook newsfeed, I was accosted by another heartwrenching message, this one from Bright Pink founder Lindsay Avner: “My heart breaks upon learning of the loss of Rebecca, a member of the Bright Pink Vermont family, who lost her battle to breast cancer at only 29 years old.”

29 years old.

Frances and Rebecca’s deaths are just two of many breast cancer-related losses I often hear about, but the news NEVER gets easier to swallow. Frances could have been my mother; Rebecca could have been me. I thank my lucky stars that my mother and I are both healthy and thriving, but two families are hurting right now, and though I did not personally know either woman, I am hurting, too.

These amazing women did not have the chance that I had to say “NO WAY” to breast cancer before it could come knocking. My BRCA mutation robbed me of a lot: the ability to be carefree, the trust I had in my body, and of course, my breasts. But it gave me something too: the chance to save my own life.

I’m a previvor. I survived my predisposition to breast cancer. If you’ve been following my blog, you know it hasn’t been an easy road to walk. I would not wish it upon anyone, especially a young woman like me. But it was necessary.

As more women learn about the BRCA mutations (and other rare genetic mutations linked to breast cancer), they are faced with the difficult decision to undergo prophylactic surgeries. They have questions. They have concerns. They are scared. And sometimes, they feel like they have no where to go, because there is no one who understands.

There is, though. There is a whole community who understands–you just have to turn on a computer.

Yesterday, Emperor Zuckerberg and his droids over at Facebook shut down part of that community. Young Previvors was a group of nearly 200 women just like me. It was a safe haven away from judgment and fear where high-risk women could ask questions, voice concerns and share stories of hope.

Young Previvors helped me when I was initially shocked by the unevenness of my new silicone implants. I shared my photo, and was soothed by the outpouring of support from women who had over time seen improvement in their own implants.

I helped women on Young Previvors, too. I described the early signs of my cellulitis infection and how I finally got my Jackson-Pratt drains taken out. I reached out to other young women, college students who were just learning about their cancer risk.

Now we need your help.

We don’t know why Facebook shut down Young Previvors. The group was not at all public; on the contrary, the privacy settings were very intense and all members were pre-screened by the group founder/moderator. Only group members could view posts from Young Previvors.

Please “like” our new page on Facebook. Share the page with your friends and ask for their “likes” too. On Twitter, tweet the hashtag #SaveYP and retweet the message from Young Previvors. You could even email Facebook directly: disabled@facebook.com.

We hope that these efforts from the public will show the people over at Facebook that this group is crucial. Isn’t the point of social networking to connect, to form a community? We did that. Why did Facebook punish us?

If just one young women like me does not find the support she needs because Young Previvors is gone, then it will be a huge loss.

Thank you so much for your help. I will keep you all updated on the progress of the group’s restoration.