Sharing the journey of breast reconstruction

As a physician assistant who takes care of many women recovering from mastectomy and reconstruction, I have a pretty good understanding of what occurs during the post-operative period. Northwestern Specialists in Plastic Surgery puts a huge emphasis on education as a practice, and being a part of this practice, I’ve learned so much about how to educate women, help them understand realistic expectations, and help them feel they are receiving the information they need to be comfortable with their reconstruction process. But, in all of that educating, I must say, I can’t give a first person account of this process. I personally have not had to experience breast cancer. The best that we’ve found we can do is give a summary account of what is most common and the range of experiences.

The more time I spend helping women through this challenging journey, the more I realize it is just that, a journey. No two women are exactly the same, and no two surgeries are exactly the same. For that reason, although we constantly strive to help women through their breast reconstruction experience, we also realize there’s still a gap we’d love to help fill.

One of our patients recently mentioned that the sensations she had after surgery were unexpected. She wished she had known she would feel some particular sensations in her breasts after reconstruction, and felt she would have been more at ease had she known about them ahead of time. As a practice, we constantly work on figuring out ways to communicate this exact type of information. In the end, however, we realize that what we end up educating our patients about are the most common experiences.

In an effort to continue to improve our ability to help our patients, this list below will present some of the initial, first person, patient reported sensations/experiences we have collected from our patients. We thought it might be helpful to provide a first person account of the feelings that have been experienced by our patients. Some will no doubt find this useful, both to look at and to contribute to.

We would love to use this space to share more and more. We hope that many will add to this list. Please share your experiences with other women about to embark on their individual journey with breast cancer and reconstruction. If you’d like to contribute, please email additional descriptors to me at [email protected]. We would like this list to be as complete as possible, and only you, women who have actually been through this process, can make it complete.

Feelings the you have had after breast reconstruction:

  • pressure
  • heat
  • spasms
  • armpit numbness
  • porcupine feeling under my arms
  • the feeling of plastic inside my body when I move
  • the feeling of wearing a tight bra even when I’m not wearing anything
  • the feeling of wearing a metal bra
  • tighter at night or when I wake up
  • itching
  • burning
  • my breasts feel bumpy
  • my breasts look flatter in the front
  • tightness that extends down my arm toward my elbow
  • tingling
  • cold

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