Wednesday, October 31, 2012

My Eggplant Expander

Oh breast reconstruction, how you have plagued me! Ok, maybe that was a little dramatic but it doesn't mean it's not true. Many times I have been asked about the reconstruction choices that I have made and how the process works so I thought I would write about it to explain my experience with reconstruction. I also want to say that I don't know anything other than the option that I chose and for some women, they are quite happy with not having reconstruction- an option that works for some women but it wasn't the right choice for me.

So, I was told that I had cancer by my family doctor (which really isn't fair considering that when I asked a question she couldn't provide an answer [to no fault of her own]). Five days later, I saw my oncology surgeon and she explained the difference between a lumpectomy and a mastectomy but I left that appointment still not understanding anything about reconstruction although she did say that she would set up an appointment with a plastic surgeon to discuss reconstruction. A week later (so twelve days after I found out that I had cancer), I met with my plastic surgeon and I had five days (before my mastectomy surgery) to decide what I wanted to do. In reality, 13 days before I met with a plastic surgeon to decided what kind of breasts I wanted for the rest of my life, I didn't even know I had cancer and now I only had five days to decide - it was an absurd process.

To be honest, the surgeon told me his recommendation and I took it. I regret not doing more research mind you I didn't really have the time and having no concept of how quickly cancer grows or spreads, the thought of getting the cancer out of me was my focus, no matter how mutilated or deformed I looked. I was also told that a nipple sparing procedure was not possible because research showed (insert stat here...) but in reality, there are surgeons who do perform nipple sparing procedures, I just didn't have one of those surgeons. Do I ever miss my nipple.

So, the day of the surgery, I had my right breast removed and at the same time, I had an expander inserted (I refer to it as one stop shopping). Apparently, having a mastectomy and an expander put in during the same surgery is not common practice so I consider myself lucky that I didn't need a separate surgery for the expander. Because my breasts were far from perky, my plastic surgeon suggested that I get a reduction on my left side to try to even them out. It seemed like a good idea at the time.

I woke up from surgery totally bandaged up and for about a week, I could not see anything underneath my bandages (which I was totally fine with). Once the bandages came off those, I can safely say that I was not prepared for what was underneath. My left side was so incredibly small (I had size 'e' breasts before and I asked for 'd' but woke up to a small 'c') and I had no idea that I would never get the sensation back in my reduced side either. If I had known any of this information, I would have seriously reconsidered my decisions.

My right side was flat and as I have written about many times, I struggled being able to accept that my breast was gone. Instead of accepting it, for weeks Keith got me dressed and cleaned my wounds (while I kept my eyes closed). I was petrified of my first expansion but soon learned that because I had lost so much sensation, I could barely feel anything (although I did still take sedatives and used an Emla patch). I had a total of seven expansions and because of my fear of needles, I asked that he double up (so rather than having the usual 50cc-60cc per injection, I was getting 100cc-120cc per injection to limit the number of needles that I needed). It caused a lot of pain doing it this way but the anxiety that my needle phobia puts me through is so crippling that it was worth it.

As I got more and more expansions, I assumed that the expander would start looking like a breast but instead it continued to look like an eggplant (thank you AnneMarie) was growing under my skin. And of course with no nipple, it looked like there was a lump in the place where my breast used to be, but in no way was this a breast.

As time moved on, the expander seemed to 'deflate' but what I think actually happened was that it slipped out of place and was now somewhat 'pooling' at the bottom of my 'breast' (and I use that word strictly for location not for description). While going to different doctor's appointments, I had four different doctors tell me that I should make an appointment with my plastic surgeon because my expander didn't look 'normal'. So, I made an appointment with him and he said, word for word, 'It should be ok.' I don't know about you, but that's not an appropriate response for me. If I've had to experience the bull shit that is breast cancer, I better end up with the best damn real looking boobs that are humanly possible and not something that 'should be ok.'

At the time of making decisions about what my breasts were going to look like, I was told that they wouldn't be symmetrical because one was a natural breast and one was a 'fake' breast but again at the time, I didn't care - just get this cancer out of me. Because doctors don't like touching healthy breast tissue and therefore the idea of getting two implants was shot down, I was prepared for my unsymmetrical set however, I expected them to look like boobs and not like vegetables. But now, now I care. Now that the cancer has been cut out of me, there has got to be something better than what I'm left with. I can't go from having 'e' breasts my entire life to then have a small 'c' and an eggplant. I am not ok with this. And because I've waited this long for my implant, what's another few months - I've decided to get a second opinion.

I know as much about reconstruction as I do about the Buckingham Palace, or building a house, or raising chickens, (that would be nothing at all) so why not talk to another expert who can maybe shed some light on breast reconstruction and give me some guidance. I am currently, I am on a waiting list for a surgeon who I have only heard amazing things about and I am hoping that she will be able to give me my breasts back, even though I am aware that nothing will ever replace my original pair, there has got to be something better than this.


  1. Katie, There is a better way. It is called the AeroForm tissue expander and it does not require needles. It is much faster than saline expanders and is completely patient controlled. Their website is Please note the breast shape which is much more anatomical than the eggplant that you talk about. Best of luck !

    1. I posted this comment, not knowing anything about AeroForm, but in hopes of providing more options for women.

      Again, I am not recommending AeroForm.

  2. Gosh, I SO hear you on so many things. I was in "just get this cancer out of me" mode when I was first diagnosed, that I ended up having a lumpectomy x3 to get clean margins. I could not even hear the word mastectomy in any of my first appointments. So when my surgeon said the word "lumpectomy" to me, I jumped all over it because, in my mind, it meant that my cancer wasn't as serious. We would just take the cancer out and be done. Well, my cancer was Stage 3, and I needed the 3 lumpectomies, axillary dissection, a year of chemo & Herceptin, 6 weeks of radiation, and still take the Femara that I swear makes me feel 99 years old. I was in complete denial, I think. Plus our kids were so young that I felt like less recovery time would be necessary with the lumpectomy and therefore would be easier on our family. I didn't give any thought at all to my thoughts past diagnosis and that I might change my mind.
    I first started having a change of heart about 2 years post diagnosis. I remember emailing my surgeon and asking her, "Now, remind me, WHY did we do the lumpectomy??" She always assured me that I could always change my mind and have the mastectomy, but that they were monitoring me closely with the scans (MRI and mammo) every 6 months.
    That bought some time for awhile, but after two more years of this, I decided that I could not do this anymore. I could not do the every six month cancer hunt for the rest of my life...I'm only 34!! I couldn't live thinking that I did not do everything possible not to have a recurrence. I had serious doubts and it almost haunted me.
    SO, ten days ago, on October 22, I had a bilateral mastectomy and tissue expanders put in, 4 years post diagnosis (9/16/08). Everyone from my surgeon to my oncologist to my new plastic surgeon understood my reasoning and supported me whole heartedly. They made me feel so "not crazy" with my decision and were great listening partners while I was talking things out. I WISH I had made the decision 4 years ago, but for some reason, that was just not my path.
    I feel like a weight has been lifted off of me. I sleep more soundly and have no regrets about my decision, and my family feels the same.
    I hope that your second opinion goes well and you get the perfect "breasts" that you deserve.
    xoxoxoxoxo (((hugs)))

    1. Uh, this is amazing. It's stories like this that make me so grateful that I write a blog and that people like you connect with me.

      Yes, in some way, in may have been easier to do the recon four years ago but at the time you weren't ready and you needed to put your focus somewhere else.

      First, congrats on taking the steps towards your own happiness. And second, congrats on your new boobs. I can't wait.

      How are you feeling?


    2. No, you're right, I wasn't even close to being ready four years ago. I was still trying to comprehend "you have cancer" and figure out how to tell our children...there was no focus to those first few days and weeks. It was simply, survive. One day to the next. I am ready now. And, I must admit, am getting excited about boobs that won't haunt me and are forever perky;) On the plus side, my plastic surgeon says that the four years actually helped me in terms of reconstruction. She said my skin shows almost no signs of the radiation I had and the tissue, when removed, looked pretty healthy. All of these things have improved with time. So, in that respect, waiting was a good thing. I'm feeling pretty good right now! Surprisingly! I am a marathon runner and right now the hardest thing is not being able to go for a run and get out of my own head. I haven't needed pain meds for several days. I have some muscle and shoulder tightness but when my last two drains get removed I should be able to start some range of motion exercises that will help. My chest is completely numb and I have what looks like Barbie boobies (without nipples:) I am praying for your upcoming appointments and I am so thankful that I came across your young'ens have to stick together;)

  3. Are you going to have the expander swapped out for a soft implant? I hear that those tend to look and feel a bit more natural (obviously it's never going to be the same as your natural breast).

    I know way more about breast reconstruction than I want to; I'm having a preventative mastectomy next week so I've had to learn a lot.

    1. Yep, that's the next step - the exchange surgery. I am looking into getting an expander put in my left side too just to have a matching set otherwise I'm going to be wuite lopsided.

      Are you having a prophalactic mastectomy? Any reconstruction?