I am a patient who has restored breast sensation after breast reconstruction. As a patient advocate who educates and speaks to hundreds of women and men about all options for breast reconstruction I am aware that many who choose breast reconstruction experience numbness and a variety of new sensations in their reconstructed breasts.
I am referencing a recent article in the New York Times, After Mastectomies, An Unexpected Blow: Numb New Breasts. I respect but don’t fully understand the statements from patients experiencing numbness regarding their experience with their own reconstructed breasts. Specifically, these:
The statement under the photo taken from the article Re “Mastectomy, Then Shock: Lost Feeling” (front page, Jan. 30):
Dane’e McCree with her daughters, Marleigh, left, and Brooklyn, in Grand Junction, Colo. “I can’t even feel it when my kids hug me,” Ms. McCree said after a breast reconstruction surgery. Credit Barton Glasser for The New York Times
An additional comment made to the editor by Gayla Paschall Kilts, Little Rock Ark.
It is the inability to physically feel the sensation of a hug that saddens me to no end. I wish that someone had told me so I could at least have made memories of what it felt like.
I will share with you now my own experience with hugging my loved ones after breast reconstruction.
Three months after my mastectomy and still dealing with the amputation of my breasts, I went to visit a newly born great-niece. I was concerned about how it would feel snuggling her up against my chest with my prosthesis. It was uncomfortable and awkward for me although I was appreciative to have the added padding of the prosthesis over a hard, flat chest. I had to check when I put her down if the breasts forms had slipped out of place in the bra that held them.
Conversely, when I held my new grandson against my chest just one year after my DIEP flap breast reconstruction, my eyes welled with tears and gratitude that he had something soft and warm to lay his tiny head against. In a more recent visit, two years after my reconstruction, my grandson placed his hands and warm head on my reconstructed breasts when he jumped, played, and hugged me in my lap. It was so comforting to know he had his Nanna’s completely rebuilt chest to hug and not a hard, flat chest with no form. I felt his hug. I feel the hug of my husband, my sons, my sisters, and friends and am glad they, too, can feel the shape of my new breasts.
Sadly, not all patients are informed of side effects such as numbness. However, what this article failed to report are those patients who are informed about numbness, and other side effects. I was informed not only by my breast surgeon who performed my mastectomy but by my plastic surgeon who performed my reconstruction.
I was told by my plastic surgeon that most women undergoing DIEP or SIEA flap breast reconstruction are also candidates for reconstruction of the sensory nerves in the breasts that provide feeling. He performed this procedure during my DIEP flap breast reconstruction and I have sensation when the area below my nipple is stroked. It is not the original feeling but I am happy to have the new sensation and glad I chose a board-certified microsurgeon who makes it his practice to fully inform. I am aware of many other microsurgeons who are forthright with their patients regarding numbness and if they can or cannot restore sensation in the breasts. I am sorry there are those plastic surgeons who do not fully inform their patients.
One final comment in reference to a letter to the editor from Debra Johnson, President of the American Society of Plastic Surgeons states:
For a breast cancer survivor, the best thing about breast reconstruction may simply be not being reminded of an absent breast when she looks in the mirror.
I speak to several women daily through a nonprofit Foundation I opened to support men and women going through breast reconstruction about their own experience. There are those I speak to in person and those I speak to through social media reaching out for support through this difficult and emotional process. I do not know the type of breast reconstruction that the women in the article had but let me share a couple of thoughts from women I have spoken to about their DIEP flap breast reconstruction.
I counseled one woman who had expanders for quite some time and told me it was very difficult to hug her daughter. She wasn’t seeking the perfect breast. What she did want was something soft and warm to replace the hard, artificial expander so that she could hug her daughter again. I asked her how she felt after her DIEP flap surgery. She reported to me that she was just happy to be able to comfortably snuggle her daughter under her arm again now that the expander was replaced with her own warm, soft tissue.
I spoke to a woman just weeks ago, in hospital who had her DIEP just a few short days before I saw her. Looking at her newly reconstructed breasts, even without nipples, she looked at me and said, “I feel reborn. I have a class reunion in March and I can’t wait to show off my new body.”
This photo is a progression from left to right of me at the gym post mastectomy and with my prosthesis just a few weeks before my DIEP flap. The center photo and one to the far right are post-breast reconstruction and body parts and feminine form restored.
Terri Coutee is the Founder and Director of the non profit organization http://www.diepcfoundation.org/. The Foundation provides education and resources to empower patients with information and options in breast reconstruction after mastectomy. She writes a blog at http://diepcjourney.com/ about the personal account of her own breast reconstruction. While working on her M.Ed. in Teacher Leadership, Terri was diagnosed for the second time with breast cancer. She turned her years of being an educator into a purposeful life becoming an educator for breast reconstruction options after mastectomy. She has taken a keen interest in the passage of the Breast Cancer Patient Education Act. She actively participates in social media administering an on-line support group, sharing evidence based research and engaging in community activities that support breast cancer and breast reconstruction. You can find her on Twitter @6state or on Pinterest and Instagram @tgcoutee.