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Deconstructing My Reconstruction

Three days ago I had my reconstruction surgery reversed and removed the implant I have had for 8 months.

Anyone diagnosed with cancer remembers how crazy it was in the beginning, right? Who can forget the day when one is first placed on the Cancer Conveyer Belt and is sucked into the Great Cancer Machine to be poked, prodded, slashed and burned…and possibly even healed.

Honestly, I do not know who took over my body for me those first 8 weeks between diagnosis and mastectomy, but I sure wasn’t driving the bus.  I was hovering about five feet above myself, feeling like I had taken bad acid.  Even so, somehow someone (maybe angels!) dressed me and I found myself walking around as if I were normal, going to these surreal appointments.

Acknowledging reality

In between appointments, I would practice saying to myself “I have cancer”, trying to help it sink in.  I was testing to see how I felt each time I said it to myself, the way we seek out a missing filling with our tongue, over and over.  All of us know the drill, that first phone call from the hospital, the one that that changes your life forever.  Following that, it is up to ten doctor appointments a week, with surgeons, genetic counselors, and of course the consultation with the plastic surgeon to discuss reconstruction.  My diagnosis was Stage II-B invasive lobular with 3 involved nodes.

It’s sort of a given that most women with breast cancer are going to want, or at least discuss, reconstructive surgery. I was a bit unsure. I was basically keen on having the procedure, but in retrospect, I was in no condition to make the choice I did so early in the game.  I wanted to be normal again, as fast as possible.  I didn’t know yet that you can’t go back, that “normal” is gone forever and something else takes it’s place.  I still thought a bag of jelly would bring back the old me.

Making the difficult decision

The plastic surgeon was a lovely man and I looked at his book of pre- and post-op photos with interest. I had modest goals and the vast majority of his patients looked pretty good. A reconstructed breast is nothing like a real one and I took this into account as well in making my (premature) decision. The doctor and I decided that he would rebuild the missing breast and slightly augment my other breast, creating a nice symmetry. I was stoked!  I was told that having my tissue expander implanted at the time of surgery was a good idea…nice result and one less procedure to endure. I am 64, gravity has kicked in and I figured it would be really nice to have a new rack, all perky and nicely positioned, so I signed on.

And so it was decided. But we don’t know what we don’t know, and in talking with the surgeon, I didn’t even know what questions to ask.  Because of this, a lot of information was left out of the very pretty sales pitch for reconstruction.

The harsh truth

No one told me that waking from my mastectomy with the expander implanted would be very painful. It was painful enough to take my breath away, causing me to weep and tell my nurse I wanted to die. The possibility of this level of pain was not even mentioned and neither was the fact that healing with an implanted expander takes a lot longer than without it. I was also not told that I would live with expander pain every day, until it was swapped for an implant eleven months later. The ‘pocket’ the surgeon prepared for the implant was sewn to my rib tissue and burned like a welding torch was being held to my skin. ‘Fills’ were not too bad.  I am an A cup so there wasn’t much to expand. Had I had even an inkling of how much the expander would hurt, I would have refused reconstruction then and there.

So, fast forward to the big day when the expander was replaced with the implant. Oh boy! So excited!!

In I go, whistling a happy cancer tune and awake in recovery, eager to see what’s going on under all those wrappings. Wait. WHAT?  My remaining breast has not been touched! On the mastectomy side is what appears to be…a Big Mac. It is larger and lower than the other side by about an inch and a half.

I ask the doctor what happened, why was my real breast not touched? He said some weird thing about the company they use not making a small enough implant, though other companies make them, and they can be special ordered.

Huh? You couldn’t have this conversation with me before you operated?

Meanwhile, the entire year, this guy was promising me symmetry and telling me how nice it would look. This is the part where everyone who hears the story starts yelling “sue, sue!!”.  They do this, not because my name is Sue, but because this whole thing went wrong and that is what unhappy consumers in America do…they sue when things don’t go their way. Speaking for me, I don’t have the energy to sue anyone when I’m busy having cancer.  I already knew some people do not have good outcomes, so I just focused on a solution.

My post-op visit to the surgeon saw me worried about the positioning of the implant.  My doctor told me implants always migrate upward, so he had positioned mine lower, in hopes it would end up just right. While I was healing, it wasn’t too bad, the swelling was actually flattering.  Once that subsided, I was left with a rippling, round mound that was low on my torso, stuck out twice as far as my remaining breast and looked nothing like the other side.

I looked like Picasso went on a bender.

As the months passed, the implant slid down a bit more. I have degenerative disc disease in my thoracic spine. My serratus minor muscles have fused from radiation and as scar tissue formed, it, and the implant, pulled on my damaged spine, causing more pain. The implant pocket continued to hurt as well. I lift weights and every time I would contact my pectoral muscle, the implant would shoot up to my collarbone like a frog trying to get out of a bag. The sensation was so creepy, I wanted to jump out of my skin.

Which brings us to this past Tuesday when I finally had surgery to remove the implant.  An implant which is now a paperweight and stress relief toy!

My doctor was most apologetic, very grateful I am not a litigious sort, and urged me to let him fix my breasts.  However, I was just done. Done with pain, done with implants.   Strangely I felt more mutilated and ill at ease in my body with my implant in than without it.  Don’t ask me why.

There is also a part of me that WANTS to have this battle scar where my breast was. We women are so quick to try and make everything nice, like it never happened.  “Oh don’t worry about me, I’m fine now! See? Two lumps on my chest! All better! Moving right along!”.  I don’t want to do that. I have been through so much, we all have, that I want this flat space on my chest to be my badge of honor.

I feel kind of badass, really, almost like getting some new ink.

Sure, I’ll wear a breast form sometimes, but mostly I plan to leave the space just as it is.  Flat.  A map of where I’ve been and what happened along the way. Far from wanting to shock or upset anyone, I want a missing breast to become a commonplace sight, to help remove the stigma that still exists around choosing to go flat.  Above all, I would urge women considering reconstruction to take your time deciding if this is right for you!

Most of my cancer friends are younger, still sexually active, and are happy with their implants.  Had I not let myself be rushed into it, I would have spared myself two major surgeries, endless pain, and discomfort.

I want to add that I had a long talk about all of this with my plastic surgeon. I thanked him for his work on my behalf, but urged that in the future he be much more forthcoming with patients about the pain and discomfort that accompanies reconstruction.  I think I reacted so badly to my pain because it caught me by surprise.  Being forewarned would have helped a lot in the decision making process.

My drain came out yesterday and my bandages were taken off. I feel great, whenever I’m not sleeping! I feel like myself again, and I am proud to have survived this long…two years and counting. My prognosis isn’t too bad, but I could not tolerate chemo and quit after one round. Likewise, I could not tolerate the daily drugs we are supposed to take for 5-10 years after diagnosis, so time will tell. All along, this has been about quality of life for me, about having the best todays that I can, as opposed to being wretched in hopes of a 5 year survival marker that might or might not happen.  In the meantime, this is the new me. Nice to meet you!



  • Show Comments (3)

  • Sue Foster

    What a brave lady you are. But, from your photo, you have had a reconstruction of some sort.
    I’m 70 now, still quite fit and I’ve heard so many horror stories about recon. It’s quite put me off.
    Thank you for doing this blog,mi think it will help lots of women x

  • Laurel Turk

    Thank you, Valerie, for telling the truth about your reconstruction. You describe that initial state so well when we are all trying to make important decisions during that “bad acid” time. I chose to go flat without much schedule, then had some regrets after a couple years, than started hearing more and more stories of women who weren’t happy with their reconstructions, or had serious health complications from their surgeries. I feel so strongly that we all need more information about reconstructions early on, so we can each make the best possible decisions for ourselves. Thanks for your strong and honest writing.

  • Kate

    Wow, thanks for the accurate description of reconstruction. I could have written it myself. I had a very similar experience with my first round with the beast. I had the expander removed within a month after, swelling, pain, necrosis and the feeling of having a toolbox implanted in my chest! Healed up immediately after the removal. The second time I was diagnosed with breast cancer 4 and a half years later, I wasted no time in saying mastectomy only, I am done with breasts….period.
    I am your age, soon to be 65, couldn’t care less about having a great rack….I have had my day in the sun, and it was lovely! No interest in chemo, as I too am wanting quality to my life. As a nurse for many years I got to witness the medical machine closer than most. I am happy with my decisions! I see that you are too!

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