Why I Didn't Have Reconstruction

Phyllis Johnson Health Guide
  • Before I had cancer, I read about a woman who had breast reconstruction after breast cancer. One of the reasons she was happy with her reconstruction was that she could now wear low-cut clothing. How vain, I thought. Why would anyone have surgery for a neckline?


    Then I had a mastectomy myself.  Because the doctor found two tumors on my chest wall, he had to remove my chest muscle to get clear margins around the tumors.  Because I had inflammatory breast cancer, he recommended that I wait at least a year to have reconstruction. I still had more chemo and radiation to go after my surgery.  He said that I wouldn’t be a candidate for implant reconstruction because of the type of mastectomy I had and the radiation damage to my skin, but that TRAM flap would probably work. He would be happy to recommend a plastic surgeon when I was ready.

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    I quickly learned why someone would want reconstruction. I had trouble finding clothes that didn’t show the dip below my collarbone where the muscle was removed.  Anything with a vee or scoop neck was problematic. I learned to wear a tank top on backwards beneath open collar blouses. Being unbalanced made my back hurt by the end of the day. A small thing that really irritated me was finding a place to put my prosthesis when I showered at the gym or changed into a gown at the doctor’s office.


    I was looking forward to that day a year from surgery when I could have reconstruction.  When I talked to my oncologist about it, she recommended that I wait two years.  IBC has a high recurrence rate within the first two years, and she didn’t want to risk the possibility of reconstruction hiding a recurrence. Inflammatory breast cancer is in the skin of the breast, and she seemed concerned about a surgery that would rearrange the skin.


    The two years came and went without my contacting a plastic surgeon. Why did I end up opting out of reconstruction?


    I was tired of doctors and medical procedures.  During those two years I had had several recurrence scares requiring imaging tests and a biopsy. I had two outpatient surgeries for problems that fortunately turned out not to be cancer. Even so, the stress of IV’s, anesthesia, and pathology reports had worn me down. I had gotten used to the inconveniences of wearing a prosthesis, and having another surgery was just too overwhelming.  


    The recovery time was too long.  I am a teacher, and we typically don’t schedule elective surgery during the school year. The six-week recovery time for TRAM flap reconstruction would eat into most of my summer vacation. Trading time on the beach for bandages just wasn’t worth it to me.


    I was afraid of complications if the surgery didn’t go well.  Most IBC patients were advised against having reconstruction in the 1990’s and early 2000’s. I knew some people from my on-line support groups who tried it, and many of them had complications before they finally achieved the results they wanted. As I read about their struggles with infections, unsatisfactory results, and multiple surgeries, I marveled at their determination and courage. But knowing that a reconstructed breast wouldn’t have  sensation, I realized that I didn’t want to take the risk just so that I wouldn’t have to hang my prosthesis from a doorknob in the doctor’s office.


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    Still I kept reconstruction as a possibility for later. I didn’t consciously decide not to have it. I started hearing from some women with IBC who had DIEP reconstruction.  They were happy with the results, and the recovery time wasn’t very long.  


    Seven years after my mastectomy, I went to talk to a plastic surgeon about having reconstruction. He was not enthusiastic about DIEP.  He thought an implant would be the way to go until he actually examined me. I could see from his face that he had not expected the devastation that is my chest. He quickly agreed that my skin is too damaged for an implant. Then we talked about the various autologous reconstruction possibilities open to me, including DIEP. I could try one, but I needed to realize that I was at a high risk for complications because of my age and other medical factors.


    Perhaps I should have consulted with another plastic surgeon who specialized in DIEP or TRAM flap surgery. I might have gotten a different answer about my risk for complications. However, once I heard the words “high risk,” I realized reconstruction isn’t for me.


    Mine is probably an extreme case. Today very few women have a radical mastectomy like I did, so they have more options for reconstruction. Still reconstruction may not be for you if you want to put surgery behind you, don’t want to take time off work, or have medical risk factors that reduce your chances for a successful surgery. Deciding on reconstruction is complicated issue that each woman must make for herself. 


    Read the story of HealthCentral expert PJ Hamel, who decided to have breast reconstruction.


    Johnson, P.  “Confronting a Poor Prognosis:  Inflammatory Breast Cancer.”  October 27, 2007.  HealthCentral.   Retrieved from http://www.healthcentral.com/breast-cancer/c/9692/15548/isnt-good.


    Johnson, P. “Inflammatory Breast Cancer Diagnosis Story.”  September 25, 2007. HealthCentral.  Retrieved from http://www.healthcentral.com/breast-cancer/c/9692/14163/start-lump.


    Johnson, P.  “More on Inflammatory Breast Cancer.”  March 31, 2014.  Health Central.  Retrieved from http://www.healthcentral.com/breast-cancer/c/9692/14163/start-lump.


    Johnson, P. “When Plans Change:  An Unexpected Radical Mastectomy.”  HealthCentral.  Jan. 31, 2013.  Retrieved from http://www.healthcentral.com/breast-cancer/c/9692/158875/surgery.

Published On: April 18, 2014