March 10, 2015

Double Vs. Single Mastectomy? What I Wish I Knew

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There’s so much support in the breast cancer world (truly, there are no adequate words to describe how amazing the support can be)…yet I found that there is also some overly enthusiastic “HOORAH!” surrounding reconstruction after a mastectomy.  If I had a dollar every time someone told me I would have a “beautiful result”…good grief Charlie Brown.

I have, by all accounts, a “beautiful result”.  I was treated by some of the top surgeons in the country, my cleavage (in most lights) is a sight to behold, and my perky, full breasts defy gravity.  

However:  they are not real.  Up close, without the bra, they do not look real, they do not feel real, they do not act real.  A beautiful result from a horrifying and monstrous surgery?  You bet.  But beautiful, real breasts? NOPE.

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The second I got that phone call, the confirmation of breast cancer, the whole world seemed to tilt.  Suddenly, I wasn’t driving straight down a road I knew, I sure as hell wasn’t on my way to swim lessons (that’s WAY too ordinary for The Day The World Tilted) but rather stuck in some…tunnel.  Or a tube.  Something narrow that didn’t quite fit – because you can’t really make sense of it, of where you are, you just know you are stuck in it, on your side, maybe upside down.  And then it starts to roll and you can’t stop.  You’re stuck in this thing, picking up speed as it rolls downhill.

A cancer diagnosis is a lot like that, at least at first.  As you can imagine, your ability to comprehend past the “you have cancer” point is severely limited.  And the world, The Tilted World is so much more terrifying and confusing – it makes the inevitable decision making process feel like a joke.

“You need a mastectomy” the doctor said.  “Absolutely on your right side, but we’d really like to do the left side too.  There’s no cancer there yet, but the calcification patterns–“

Ok I said.  I’ll do both.

And mostly, that was it. That was the sum total of my decision-making process: Ok.  

I just wanted to live.  I wanted to live long enough to see my children grow.  I wanted to live so badly that my hands felt like claws and I was prepared to claw my way back to health on my hands and knees, begging, if I must.  That’s what a mother does.  At that point, even if the doctors had told me they needed to do a double mastectomy and take my arms, too, just to be safe or maybe a leg, my answer, in that moment would not have changed: Ok.

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Luckily, I had time to process the decision.  I talked to my Mom (who had a single mastectomy 15+ years ago), I talked to breast surgeons, plastic surgeons, and other breast cancer survivors.  I learned that I could get by with a single mastectomy, if I really wanted, but they would be watching my left side very, VERY closely.  Nipple sparing surgery was a possibility on my left side only – the cancer was too close to the nipple on my right side.  Reconstructing breasts from fat elsewhere on my body probably wouldn’t work.  (“But!”  the plastic surgeon said helpfully, “Maybe when we’re swapping out your implants in 15-20 years you’ll have enough fat then!”)  Note to self:  Plan on being old and fat.

But my initial gut reaction, the “OK”, stood.  I opted for a double mastectomy, closely followed by reconstructive surgery – all to be completed before I started chemo.  The only concession I made was to go forward with nipple sparing surgery on my left side.  The advantage, I was told, was that I may get sensation back in my left breast someday.  Now, almost two years later, I have a few thoughts on the subject.  Here’s what I learned, a few surprises I wish I had a head’s up on, and a few fears that never came to pass.  

Mastectomies, Reconstruction, and Things I Wish Someone Told Me

A mastectomy and reconstruction is not the same as getting a boob job.  Because your breast tissue is removed, implants go behind the muscles in your chest wall.  This will feel exactly like you think it will.  Pushups feel strange, and sometimes while driving, if I turn the wheel sharply, I can feel the muscles pull across my breasts.  It’s such a strange sensation (and wrong!! it’s all wrong!!) that it used to make me nauseous.

Your breasts post-mastectomy (what’s left of them anyway) will mostly likely be strange colors, flattened, wrinkled, bruised and bandaged little things.  It’s not pretty, but neither is it as bad as I thought.  In the days leading up to surgery, I worried unnecessarily about the “horrors” I would see.  It’s fine.  Don’t lose sleep over this one.

Get a prescription for a prothesis.  You never know exactly what will happen after your mastectomy.  Chemo might enter the picture, dates get moved around, how you recover can change your reconstruction schedule.  In the meantime, you are missing some boobs and a key part of sanity is not staying indoors like a sick person.  A prothesis (fake boobs, like chicken cutlets) can help.  But you’ll need a prescription for it, so don’t leave the hospital without one.  If you can, take your prescription to Nordstrom.  They’ll not only fit you for a prothesis, but help you find a (shockingly beautiful) bra to wear it with. (And help you navigate the tricky insurance waters.)

psst!  I’m wearing an Amoena prothesis bra in the pic below.  A far cry from what you were stuck with 20 years ago, right Mum?

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If you choose to get a single mastectomy, remember that they won’t age the same.  #quotefrommymother #truth

They’ll always be your breasts.  One of the happy surprises is that I never felt like my breasts were gone.  Yeah sure, they no longer work, they look a lot different, and they’ve definitely been through some tough times….but they’re still ‘my girls’. 

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You will sleep on your stomach again someday. As a point of reference, it took me 5-6 months post-mastectomy. 

Even after the reconstruction, there’s so much swelling and recovery that the shape of your breasts will change slightly over the next couple of years.

Reconstructed boobs are cold.  My reconstructed breasts are not body-temperature, they are room temperature.  Which means…they feel cold to the touch.  Isn’t that shocking???  I’m constantly surprised by this fact. (Four-year-old Pax however, is still completely obsessed with my boobs, and dives down the front of my shirt every chance he gets.  So clearly, they’re fooling someone.)

Plastic surgeons play it fast-and-loose with breast size.  He and I agreed on – AND I QUOTE – “a full B cup”.  Know what bra I’m wearing?  32D. (In his defense, it looks great.)  But in general, I wish I had understood how little control I had over the final result.  For example, during the reconstructive surgery, the plastic surgeon goes in with several possible implants.  They pop ’em in, then prop your drugged self up (no, I am NOT kidding) so the room can check out the handiwork.  “That one needs to come up a bit”, or “no, the other size/shape looked better” are the kind of discussions they have as a team.  So rest assured that when you wake up from surgery, you get what you get what you get.  (Hence, the importance of finding a really good plastic surgeon.)

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Reconstructed boobs don’t look, feel or act like real boobs.  There is some…puckering that happens under the skin when I make certain movements – almost like cellulite. #awesome Reconstructed boobs are harder, higher, jiggle less, and, once you know what to look for, relatively easy to spot.  One the upside, I will never need to wear a bra again.  I can jog, braless.  It amazes me each and every time.

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Your sex life will be missing something.  Even after two years, I don’t have much feeling in my breasts.  And if I understand correctly, they will never again be part of sexyfuntimes (there’s a small chance that my real nipple will eventually get some sensation back, but so far that hasn’t happened).  My brain can remember back to a time when they were involved – to the point where I can *almost* feel something, but really, that’s just a good imagination rather than reality. This is the toughest lasting symptom, and the truth is….it makes me really sad.  

Nerves grow back, slowly, in weird ways, and sometimes not at all. Even after two years, I can’t feel much in my lats.  They are still numb from my mastectomy.  (My mom also has this problem…and her mastectomy was almost 20 years ago.)   

However, nerve endings are growing back.  I now know when someone is touching my lats (although I often can’t tell how hard), and when Mike jokingly does “boob therapy” (where he grabs my chest with both hands) I have some sensations on the edges.  Fun fact:  If I look in the mirror while Mike does his boob therapy (standing behind me, wrapping his hands around to the front) it’s like my poor little nerves and my brain can’t agree (my brain remembers what it SHOULD feel like, my actual nerves do not) and the sensation is….AWFUL.  It’s like an physical manifestation of “mind blown” and almost always results with me taking a swing at Mike’s face, and we end up collapsing in a heap from laughter.  I am shuddering and giggling as I type this.  It’s just SO BIZARRE.

Assuming you HAVE a choice, the choices you make regarding mastectomies, reconstruction, nipple sparing, etc. can be boiled down to this:  aesthetics or sex.  Sadly, you don’t get both. 

With a double mastectomy, you are completely removing one of your sex organs, but can have, by all accounts, “a beautiful result”.  With a single mastectomy, you are preserving one breast’s sexyfuntimes but you will struggle – in a worsening battle as you age – with trying to keep your reconstructed breast (or prothesis) and your real breast even. It’s virtually impossible.  (Hint:  My mom will sometimes use a prothesis to balance out her real side.  Cleverness born of desperation, that’s cancer for you.)

Additionally, if aesthetics are your main objective, don’t go with nipple sparing surgery.  Nipple sparing surgery (in my opinion) should only be done if you are hoping to someday get sensation back.   If you just want beautiful, matching nipples, then let yours go.  Even if you had pretty ones to begin with, nipple sparing surgery can change the shape, color, and um…direction they point.  However, the skin oragami and nipple tattoos that can be done on bare skin is jaw-droppingly amazing.

To nip or not? Trying to decide how to finish off my nipples has proven a much a harder decision than single vs. double mastectomy.  For example, do I have them recreate a physical nipple, and THEN tattoo it?  This method is closest to the original, but I’d be left in a permanent ‘nip’ situation. (“Are you cold?”  Nah, that’s just my fake nipple.  SIGH.)  OR….I could simply get a 3-D tattoo of a nipple.  From the front it would look normal, but from the side, you could tell that it’s just…..a tattooed nipple.  Safe to say that a career in stripping is off the table.   So instead, here’s another boob shot.  HA!  #boobsforterri #insidejoke

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These decisions are weighing heavily on my mind right now – I actually have a consultation with the plastic surgeon on THURSDAY.  To nip, or not to nip?  THAT is the question.

Also, Nordstrom had asked me to take a look at their Amoena line.  Amoena makes a whole line of bras, camis, and swimwear that can easily be worn with a prothesis.  My mom had a single mastectomy almost 20 years ago, but her own reconstruction is more recent – in the last 10 or so.  So for 10+ years, my poor Mom put up with ugly, matronly bras, truly terrifying swimwear, and a fear that if she leaned too far forward, you’d be able to see right down her scarred chest.  Breast cancer is ugly and frustrating.  So I’m beyond thrilled that someone is finally (FINALLY!!) coming to the aide of those dealing with a prothesis.   I mean seriously – these beauties are a far cry from what my mom had to deal with 20 years ago.

(The Amoena line has actually been around for 40 years…but in our tiny little town of Marquette, MI…we never knew.  Here’s a real big ‘YAY INTERNET’ on that one.)

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This has been such a crazy journey, you guys.  Never in my life did I dream that I’d be writing so much about nipples.  GAH!

xo,

S

A huge thank-you to Nordstrom for sponsoring this post, and to Amoena for doing what you do.  As always, all product choices, thoughts, and opinions are my own.  (Or as Pax would say, “MINE OWN”.)  Thank you for supporting the retailers who help support The Mom Edit.  

photography credits: Mike Draugelis

51 Comments
  • Jamie Holloway (@jamienholloway)
    March 10, 2015

    So well put– aesthetics or sex. Yep, it boiled down to that. I didn’t consider the sex angle as much as I should have, but still wouldn’t have chosen anything but the double. I did go with tattoo only– Vinnie Myers outside of Baltimore is FABULOUS and while I didn’t keep either nipple, I’ve seen pics where he matched an existing nipple that were remarkable!

    • Shana
      March 12, 2015

      Thank you!

      • Bri
        April 3, 2016

        Hi Shana,
        I really appreciated your article on “what I wish I knew”. It was very enlightening. I am about to have a mastectomy and am still torn about going with the double or single with reconstruction.

        Looking back would you have any additional advice for me? Thanks so much!

        • LOIS
          May 17, 2016

          Just wondering if you decided anything yet? If so, what and how? I have to have a masectomy and am debating one or two It is maybe the toughest thing for me so far.

        • Sandra
          August 31, 2016

          I had a single 2015 and have spent most of 2016 wondering if I should get the other one “done: Tough decision.Hope yours went well.

  • Jennifer Broughton
    March 10, 2015

    This is an amazing piece. It really sums everything up. I wish the could give a copy to every women who has to make this decision because it has detail and real life experience that the doctors don’t always tell you. I am happy with my decision to have a double mastectomy and reconstruction but there were definitely trade offs. The hard part is much of the outside world so sees it as a boob job and I cringe at the comparison. Thanks for this, I am definitely going to pass it on.

    • Shana
      March 12, 2015

      Right??? It’s SO not the same….

  • Ali
    March 10, 2015

    Shana, your courage and “realness” are amazing, and a blessing. I almost cried just reading this, thinking of what you had to- and have to- go thru, and that you share that with us. Thank you.

    • Shana
      March 12, 2015

      Ali, thank you for this. xo

  • E
    March 10, 2015

    Thank you so much for this. My single mastectomy is April 14, and this spoke to so many of the issues that I am wrestling with. I found your site about a year ago, and about seven months before I was diagnosed with breast cancer. I am finishing chemo this week. It is embarrassing how much I have depended on your story and experience as I have been making my way through my own. I am not a big fan of the breast cancer forums….just too much cancer…but here, a little cancer, plus some cute shoes, plus something about being a mom of a three year old…that is so helpful and reassuring. I am lucky that I stumbled across your site when I thought I just needed it for denim inspiration, as it has been a real resource in helping me keep a sense of myself through the rest of it.

    • Kristie
      March 10, 2015

      “but here, a little cancer, plus some cute shoes”

      Well put. 🙂

    • S
      March 11, 2015

      Good luck to you. I think I will always be sorry when someone joins the breast cancer club.

    • Shana
      March 12, 2015

      E, I’m so sorry to read this. Like S mentioned below, I hate when someone joins “the club”. But if you ever have any questions, please feel free to reach out. I’ll be thinking of you on April 14. (And I totally get what you are saying about the breast cancer forums. They can be so simultaneously helpful and too much.)

  • Ginny Goerz
    March 10, 2015

    Thank you for sharing all the details of your story. Your beauty shines through from your soul. And on the upside you can wear any Free People top that you want.

    • Christy
      March 11, 2015

      Hahahaha!

    • Shana
      March 12, 2015

      No but seriously this might be my fav part. 🙂

  • Missey
    March 10, 2015

    Shana- As an Oncology nurse, I would like to thank you for sharing your story in such a realistic and frank manner. These are facts and realities, and when we shy away from them, we are doing ourselves and those around us a huge disservice. Thank you for dispensing with pretense and just laying it all out there. Life is messy, but it is still life. This should be our dialogue because there is nothing dirty or shameful about it. Thank you

    • Shana
      March 12, 2015

      Missey – YES: “Life is messy, but it is still life.” Exactly that.

  • Kristy B
    March 10, 2015

    So well put…nicely done…this type of info is just not out there…until now. Thank you

  • Cindy K
    March 10, 2015

    Wow Shana! I had no idea what all goes on in fighting, surviving breast cancer. Really eye opening and informative. Thank you for sharing your story.

  • Terri
    March 10, 2015

    Did this post really happen? XXX!

  • Kelly M
    March 10, 2015

    Wow. Thank you for this post. It was really touching. And I know I complained about all the Nordstrom posts a few months ago, but never again after seeing how awesome they’ve been!

  • Reasons to Dress (@reasonstodress)
    March 11, 2015

    You amaze me every single time you write one of these open and honest posts. I’m totally teary eyed as I write this. You are truly an inspiration to me and to so many women who want to say the same things and are not bold enough to do so. Years ago, after I had my son you inspired me to start taking care of myself again and start writing my own blog. It has been one of the biggest joys for me to create community and feel connected to other women and feel beautiful again.

    I think, in the end, all of your posts are a reminder to all women that they have the strength and ability to be beautiful and feel comfortable in their own skin, which should not be underestimated.

    When I was 16 I had to have reconstructive surgery done on one of my breasts that has left me with very little feeling, even after 15 years. So many of the details you described remind me of my own body and moments spent coming to terms with the situation. I was not able to breastfeed my son because of this, however, I did try pumping and I must say that the experience of pumping (nearly 14 years POST SURGERY) brought back so much feeling into the area. I still can’t feel hot and cold but pumping opened nerve endings I thought were long dead. The body is an incredible thing, and you are an incredible woman. The loving relationship you have with your husband is strong enough that if you do not let this get in the way of your intimacy it won’t.

    I could go into how sexiness is in our minds and what real attraction is…but I won’t. I’ll just say that I totally valued this post and you are a role model to women.

    • Shana
      March 12, 2015

      Thank you for this!!! The body IS an incredible thing, isn’t it? It’s crazy how much healing can happen. And thank you so much for your kind words – this online community has been such a source of strength and connection. It’s amazing.

  • S
    March 11, 2015

    Shana, I never fawn over people on the internet, but I am always just amazed at your strength and honesty, you are such an inspiration.

    The first anniversary for my double mastectomy is a week from today. I agree with almost all of what you said. Especially the part about “it’s wrong! It’s all wrong!” In fact, no one told me about this, and it was the thing that made me cry in the shower for months, seeing my muscles contort while I washed my hair. Yes, it’s all wrong. Can you do a push up? I am impressed. I did ONE the other day and I thought I was going to die. Also, I only lay on my stomach for long enough to have a massage. 😉

    In my case, I was able to have immediate reconstruction, so for me it was one long surgery, 9 1/2 hours. Also, I was told that there is a good chance that I could keep these implants for the rest of my life, but that even though implants won’t change, the skin will age.

    I can barely touch my own breasts now. I have to force myself to wash them in the shower. If anyone were to touch me there I’d probably punch them. lol

    • Shana
      March 12, 2015

      WOW. If immediate reconstruction would’ve been an option…and Chick!! You weren’t that far behind me! Crazy how fast things change. But yeah – hang in there. There’s a HUGE difference between now (almost 2 years for me) and a year ago. And an even bigger difference (like Grand Canyon huge) between my mom and I. I don’t even think you can see her scars anymore. Crazy, right?

  • anne
    March 12, 2015

    Thank you for your openness and bravery. I shared this with my mom in law… two of her friends are currently battling breast cancer and finding it hard to find honest info on the subject. Thank you so very much!

  • Katie
    March 12, 2015

    I just loved this post. I had no idea of the ins and outs involved in breast reconstruction. I ignorantly assumed it was similar to a boob job…thank you for educating me and righting my misconceptions.

    • Amanda Blackwood
      March 19, 2015

      Katie – I too thought the same. It is NOT at all. In so many ways. Both emotionally and physically. Before my mastectomy – I had this out look like – out with the old and in with the new. Not that simple at all. But this links/blogs are so nice to have. We woman can relate and share each others thoughts, frustruations, feelings and if someone has to go through a situation like mine and so many others – it is nice to be able to relate. Thanks again Shana for sharing!

      Enjoy your day Katie!

  • MA
    March 12, 2015

    Thank you, thank you, thank you. My grandma and my mom both had breast cancer and I have been thinking hard about double prophylactic mastectomy.

    I have two little guys and really responded to your writing about them.

    Thank you for every last word that you put up there. The universe puts us in the right place at the right time–I think that I came across TME a few months ago just so that I could read this (and, you know, also for the cute shoes.

  • Amanda Blackwood
    March 16, 2015

    This was a great post. Thank you! I had a total mastectomy in November 2014. I am still in the reconstruction stage. I do NOT like the xspanders. SO ready to get them out. It feels like a really bad fitting bra that you can’t take off. And yes sleeping is not good. I hear all the time – “just think – you are going to have really nice perky boobs”. Well – it is not that simple. That’s like going to a furneral and saying to the person, we are so sorry for your loss, but just think, you will have a nice insurance check soon. NOT GOOD! Because when you have a mastectomy it is a LOSS. I understand people mean well. But unless you’ve gone through this painful path, you just don’t get it. And the sex is definitely NOT the same. My husband has been so understanding, but it’s not him, its me! My boobs are GONE! I have no more breast! I call them my nubs. I am so thankful for the outcome of the cancer, but I really miss my breasts!!! Thank you for the information on the bras. Good to know.

  • Ann Krembs
    March 16, 2015

    Wow. Loss of words. You’re very brave Shana. And I’m so happy you are healthy now. I can’t imagine how scary the whole thing (and future checkups) must be. Thank you for sharing.

    Ann of Kremb de la Kremb

    PS This is very vain of me, but I’ve always wanted to get my girls lifted and reduced. Your explanation of all this helps me to say nah, not worth it. I’ll just invest in good nice perky bras instead!

  • amanda
    March 18, 2015

    A very excellent post! I found you through the breast cancer stuff and agree with the above poster- “a little cancer, some cute shoes.” I did breast conservation surgery- lumpectomy- very very easy compared to what you’ve gone through. Love your new site, your style- writing and fashion both. Keep up the great work. And PS you and your family are as cute as they come!

  • Megan
    March 19, 2015

    What a great post. I agree with everything you said. No one prepared me for the loss of sensation in my breasts. It’s so upsetting when people think you just got a great boob job as a bonus from the mastectomy. NO! You have totally lost an erogenous part of your body. I really miss it.

    Btw – your cleavage looks great!

  • Melissa
    March 25, 2015

    Great post. I was recently diagnosed with breast cancer myself and in that scary what is the right decision for me phase. It is wonderful to see how great you look now but acknowledging the real issues you faced and still face. Thanks!

  • Nikki
    December 26, 2015

    Back when you were going through diagnosis, surgery, and treatment, I was keenly interested in each post, because 1) I was a longtime reader of your blog, and 2) breast cancer runs in my family. Well, fast forward to this summer and I got a genetic mutation diagnosis, and since then I’ve had what’s felt like a million tests and consultations.

    I will be having a prophylactic bilateral mastectomy on January 15. Truthfully, I am excited, because if all goes well with the breast tissue biopsy, I will be the first female family member in four generations to not have breast cancer.

    I referred back to this post when making decisions about what to do with my boobs. I was willing to let go of my nipples, but as it turns out, I’ll be keeping them because I’m a petite person and my surgeons said I would have more options reconstruction-wise because I’d have more surface area skin to work with. I get to decide boob size and implant type during my post-surgery expander fill appointments.

    I have a couple surgery questions, if you don’t mind and you have the opportunity to answer:

    I’ll be coming home in a compression bra with drains. I’d like to find another bra that I can switch out with it so I always have a clean one. I imagine you did the same – did you have one you liked?

    Did you wear a prosthesis during the weeks/months you were getting your expanders filled?

    How long before you could cuddle your boys without having to be worried about them hurting you? My youngest kids are 4 year-old and 17 month-old boys.

    It’s been suggested to me several times that I get a wedge pillow for sleeping. The way people talk, you’d think that anyone who’s ever had a mastectomy has used one. So I figured I’d get one, too, but no one said anything about the wedge height. Was a wedge pillow something you used? And (million dollar question)—> What height was your miracle piece of slumber foam? Interestingly, the top seller on Amazon is 12″ high, and many people buy it as a sex position pillow. I am so down with that, but my focus right now is comfortable sleep.

    • Annie
      December 30, 2015

      Hi Nikki,

      I’m not Shana, but I just had a double mastectomy with reconstruction (plus lymph node dissection) three weeks ago. I’ve been reading Shana’s breast cancer posts here and there and really love this post in particular. I saw that your comment was from just a few days ago so I just had to reply.

      I was diagnosed with stage IIIA breast cancer last month. It was very aggressive, HER2+, I will be starting chemo next week.

      First, I’m so sorry you have to go through this, but I think it’s great that you are doing this preemptively. I would have made the same choice in your shoes.

      I guess it all depends on your surgeons, but I did not wake up from surgery in a compression bra. I went braless until all my drains were out. I had five drains (I think you will have four, one of mine was for the lymph node removal). I think the typical thing is that two of the drains are removed one week post-surgery and the rest one week after that. In any case, if you do wake up in a compression bra I would ask a nurse to give you another one so you will have two. I was given one and have been wearing it since my drains came out but I wish I had another.

      I have not been wearing prostheses. BUT my surgeons filled my expanders with a little saline during the surgery (B-ish cup), so I did not wake up flat-chested, which was a nice surprise. It’s not typically done that way but I live in a medically underserved area and had to travel quite far for my surgery. They filled them a bit so that I will have to make fewer trips back to be filled. Anyway, it’s a personal decision but I don’t think I would have bothered with the prostheses. Even now, three weeks out, it sounds incredibly uncomfortable. I think by the time you are done wearing the surgical bra will be about the time you get your first fill.

      My youngest just turned 2. I showed him my owies right away and he adapted very quickly. He knows he can put his head on my tummy when he wants to cuddle. I also sometimes lay a very soft squishy pillow across my chest and that makes it pretty comfortable. I think your 4 year old will adapt and understand right away but it might be more confusing for your baby. Keep a soft squishy pillow handy for cuddling. I have very little pain now and haven’t even taken Tylenol for many days but I still don’t feel comfortable having him cuddle up against my chest without the pillow. I’m so sorry, I imagine this might be the hardest part for your 17 month old.

      I did not use a wedge, I used one of those bed chair lounging pillows with the little arms. It worked okay. I put a pillow on top of it for my head. It got to be really uncomfortable on my butt though. Sleeping sitting up really puts a lot of pressure on it, I did it for a little over two weeks. Now I sleep propped up a little with two pillows and that is much, much more comfortable. I still don’t sleep on my sides though. I wish I had tried a wedge so I could tell you if it’s more comfortable than the chair pillow.

      Lastly, I just want to say everyone’s experience is different! For me, the anticipation was definitely the hardest part. I did not find the surgery or recovery so far to be as painful as it sounds like Shana’s was. And my arm mobility is really good, especially on my side that did not have the lymph node dissection. I would strongly recommend getting off the heavy duty painkillers as soon as you can. They are very helpful the first few days, especially when you get out of bed the first time after surgery. I used them for one week and I swear I started having withdrawal symptoms every four hours (I would feel flu-ish and really blah, then take a pill and feel great again). So I quit cold turkey and switched to plain Tylenol. I felt crappy for one day and then felt normal again. Also, it was tough to force myself to get up the day after surgery but I felt a million times better once I did. Take short walks down the hallway, it is amazing how much it will perk you up.

      Best of luck to you. I’m so sorry you have to do this, but you will make it and be just fine! You will find a new normal.

      • Nikki
        May 17, 2016

        Hi Annie, It’s been a few months since my post and your reply, and I hope you are doing well with your treatment and expanders. Your reply was so helpful, and I wanted to let you know that it was so reassuring for me.

        I also wanted to update my experience in case anybody reads these comments and could find them helpful.

        I did have a prophylactic nipple sparing double mastectomy as planned on January 15. My pathology report came back that I indeed had stage 1, estrogen +, lobular breast cancer. It was a tiny tumor, less than a mm in size, and had clear margins. First and second opinions both said I do not need any further treatment – surgery was enough. In some ways, I feel like I dodged a bullet, especially since I had very dense breasts and many begin fibroadenomas. That made my MRI’s, ultrasounds, and mammograms difficult to get a reliable result. So, instead of being the first female family member in a few generations to evade breast cancer, I get to be the youngest one diagnosed with it. I am 37.

        I, too, had expanders placed at the time of mastectomy. After a couple weeks of recovering, my plastic surgeon began the weekly fill process to expand my chest muscles in preparation for silicone implants. Everything went well with no complications, and two weeks ago I had my exchange surgery. That has gone well, too. My implants are still in the phase where they are somewhat firm and not very mobile, but I am assured that they will “drop and fluff” in the coming weeks. They aren’t perfect, but I think they are quite nice now, but my surgeon says they will continue to change and improve. She says not to pass any sort of judgement or set any expectations until the three month mark. So here I am eagerly awaiting what my fake boobs, aka foobs, will morph into.

        All in all, I cannot complain. Yes, the mastectomy hurt a lot physically and wilted my body image a little. But things have been getting better the further I am in the process. My husband, children, and a few close friends, have been my champions, and our bonds are even closer than they were before. I was somewhat worried about the effect all of this would have on my sex life, but I can say those fears were unfounded. Things are great, and I can only see them getting better once my body heals even more.

        So here I am in my new normal, and it’s not a bad place to be. Not bad at all.

  • Cindy
    July 20, 2016

    Thank you ladies. I just stumbled onto this post and the timing is perfect. I’m at the decision point of one vs two and if only one, implant vs flap. The plastic surgeon I saw this week said I don’t have enough stomach for two. It’s great to have choices but overwhelming at this point.

  • Tess
    July 30, 2016

    I keep returning to your post. As a second time bc woman..first was thirteen years ago, lumpectomy and six weeks of radiation, second diagnosis this year in February. I want to thank you for posting such an honest assessment of what it really is like. I am faced with the tough decision of single versus double and am leaning toward single\. I can always ca;; my reconstructed my bionic boob. I am loath to give up my cancer free one and even though I know the medical profession will insist on testing the hell out of it, I just don’t feel I have the courage left after six months of chemo to deal with both sides, I love the bra, the denim, the shoes..but most of all the honest woman who is not afraid to tell it like it is..thank you !

  • Sandra
    August 31, 2016

    Thank you for a great article. It has taken me almost a year to pluck up the courage to read an article like this. I can relate to most of it.Wishing good health to all.

  • Tina
    October 11, 2016

    This is such helpful info – including all the posts. I have breast cancer that has metastasized to lymph system and bones. Doing 5 months of chemo first, then mastectomy. Also in decision phase of single or double mastectomy and if nipple saving is what I really want to do. I think I have decided on double mastectomy because I just can’t imagine going through all this again. I love what you mentioned about if you have the nipple reconstruction you have constant headlights. I HATE the headlights! And if you did do single mastectomy and reconstruction, then you would have constant headlight just on one side?? Doesn’t sound good. I love that this is light-hearted talk but yet gets to the points that matter. and agree, most of the cancer sites are all doom and gloom. I am a positive person. So although none of this is good, I can’t let it drag me down – gotta live life! Thank you all and I look forward to more discussions! Take care – T

    • Shana
      October 11, 2016

      T – first of all, I’m so sorry to hear that you are going through all of this shit, too. But in terms of nipples (haha if I had a dollar every time I said that) things have changed a bit since I wrote this. My one reconstructed nipple has all but completely flattened out. I hear this is pretty common over time. And my “real” nipple – the one that was saved, still doesn’t have sensation – won’t respond to cold or touch. The result on that side is that I have a case of permanent nips. Sigh. I saved it in the hope that one day I’d get sensation back, but so far that hasn’t happened.

  • Cassidy Hennigan
    October 13, 2016

    In the end, what matters the most is the attitude with which you face such a life-altering episode; the attitude and seeking support. Events like these change us forever… XoXo to all and each!

  • Kristine Handley
    October 13, 2016

    Hi Shana, I have read your posts repeatedly through my breast cancer treatment to get me by, they are so helpful and comforting, thank you! A lighthearted approach truly helps when EVERYTHING else is so serious. I was hoping to find out if you chose silicone or saline? I’m in the reconstruction phase and am struggling with that choice as silicone for health reasons makes me nervous.

  • Tina
    October 14, 2016

    Hi Kristine – I am currently visiting a couple reconstruction doctors still trying to decide who to use for that phase. I was surprised when I met the first doctor he said all he uses is the silicone. I’m with you – way back when – silicone was very bad, horrible illness if they leak. From what I understand the silicone has cone a long way and is not as “fluid” as they used to be. But still, it was pounded in our heads not to use. A few other points this first doctor made that has me wondering how good he really is is that even with expanders he doesn’t think we will even get to the size C that I am now, and he talked about using cadaver skin to reinforce under the breast. I hate to compare this to a TV show but I do watch “Botched” and there was a woman on there that had prophylactic mastectomies. Her breast were all rippled in huge waves, very messed up. When they took out her implants they said the doctor used cadaver skin but did not anchor it down so it all rolled up and made those huge ripples. The Botched doctors acted like it was weird that the first doctor used cadaver skin. The Botched doc used some sort of mesh to reinforce. I don’t really know which is the most common practice but, that has me paranoid. And his whole website is about cosmetic EVERYTHING. I was hoping this doctor would work out because he is much closer to my home, only about 45 min drive. I meet the second doc at the end of the month. He is in Atlanta which with traffic is about an hour and a half away. ugh.. So many decisions!
    On another note – How did everyone feel about radiation (if you had to do that). I am on chemo now – 5 months of chemo, then double mastectomy, then on hormone therapy for the rest of my life. I am not seeing the benefit or necessity of putting my body through radiation as well. They say it is precautionary incase any loose cells are still in there but the chemo is supposed to kill all that. and then the surgery is going to cut out all the diseased tissue and more. The radiation is to a small area but yet causes so much tissue damage and can cause seromas and frozen shoulder, so many unnecessaries. I’ve made it clear that I do not want to do radiation so my doc seems to waiver,” we may be able to skip, we’ll see” So again, has anyone else refused it? Thank you ladies – looking forward to any feedback. Take care All – T

    • Nikki
      October 14, 2016

      The use of cadaver skin, most commonly referred to as Alloderm (a brand name), is not an uncommon practice for breast reconstruction. I know the episode of Botched you speak of – and I wouldn’t let it scare you.

      I don’t know if you’re interested, but when my journey started I joined a very active Facebook group for people going through mastectomy and reconstruction. It’s called Prophylactic Mastectomy, and as you can imagine, it’s focus is primarily geared toward prophylactic mastectomy. Despite the name, it is a wealth of information and I found it incredibly helpful when making decisions, like choosing implants, and also post-op, like “Does this look like something I should call me doctor about?” type of questions. I would have been lost without it.

      • Tina
        October 14, 2016

        Thanks so much Nikki – I will definitely check out that facebook page.

        • Christian Miller
          December 10, 2016

          Alloderm was used in my reconstruction. From what I understand, it was used as a “sling” under the implants and between them to get them closer together. I think it was also used in my nipple reconstruction. I’ve had no issues over the past 5 years.

  • Sarah
    October 19, 2016

    Not sure wheat you ended up doing, but after a double mx and reconstruction (implants) I got tattoos (nipple and areola) from Vinnie Myers in MD. Flew out from Denver and I’m so happy I did!

  • Christian Miller
    December 10, 2016

    So much YES!! I realized Thursday at my annual appointment with the surgeon who did my bilateral mastectomy (at 35) that I’ve hit the 5 year mark. Wow. A marriage, new house, new jobs, two kids and 4 half-marathons later, life couldn’t be better AND I don’t don’t have to see her again if I choose not to. While everything you said about recon is true (some breast sensation does come back – very strange sensation…), our decision means we will live, love and THRIVE for many years to come.

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