It’s hard to believe it has been more than a year since my breast cancer diagnosis. At the time I remember someone telling me the next year would be hell. In many ways they weren’t wrong. For now, life has returned to a semblance of normal, and I am trying to enjoy every second. There is, however, a constant reminder of what I have been through and what is yet to come. It hits me every time I take a deep breath, or get a hug, and especially when my daughter lays her head on my chest. That’s when I really "feel" the toll the breast cancer has taken. It’s discomfort and numbness all at once. Of all of the side effects of treatment, for me, this may be the hardest.
Before breast cancer, I never realized that women who have mastectomies lose feeling in their chests. It makes sense, of course — since the nerves are cut during the surgery — but it’s not something that is often talked about. After all, the most important thing in the surgery is removing all of the cancer and saving your life. So, numbness is something I thought I would just have to live with.
Luckily, a friend introduced me to a doctor in New York City who is doing a procedure that could change the way women feel after a mastectomy. Dr. Constance Chen, MD, a reconstructive plastic surgeon, is one of a handful of surgeons who is reconnecting nerves as part of natural tissue or ‘"flap" reconstruction. She removes fat and tissue from another part of your body to create breasts, but when she does the microsurgery to connect blood supply, she also uses a nerve graft to reattach nerves in the chest. It’s similar to the grafts that have been used since 2007 in arms, legs and hands.
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It’s in my nature to research everything, so I asked other plastic surgeons about the possibility of regaining feeling in my chest. They all told me, “it doesn’t really work,” or “the procedure isn’t there yet,” but when I spoke with Dr. Chen’s patients, I heard a very different story.
Jane Obidia’s experience is the one that stood out the most. She was 43 when she was diagnosed with cancer in both breasts. She was a relatively recent newlywed, and was about to become a mom via surrogate. In fact, the week she was diagnosed, they were scheduled to transplant their embryo. Today she laughs at the cruel timing of the disease and that first conversation with her breast surgeon. Obidia recalled saying to her doctor, "'You know, it's taken me all this time to find the man of my dreams. What do I have to do to grow old and wrinkly with him?' And she said, 'double mastectomy.'"
So that is what she did. The reality of what that meant, though, really hit her months later when nurses laid her new baby, Alana, on her chest. She couldn’t feel the infant because surgery had left her numb. The joy of that first moment with her child was intertwined with all that breast cancer had taken away.
She knew she should feel lucky to be alive and she did, but she says she never felt quite like herself. She thought it was something she had to live with, and then a problem with her implants led her to Dr. Chen and a natural tissue reconstruction along with the procedure called Resensation.
Today, she tells me she has about 80% of her feeling back. She can now feel a hug from her daughter, or the water on her chest as she goes for a swim. She told me, “What this surgery gave me was the ability to be able to stand in front of my husband and say, 'You've got Janey back', adding, “to be able to have that connection back with him, that's been everything.”
It was her story that helped convince me to try the Resensation procedure when I have my reconstruction later this year. Dr. Chen warns me there are no guarantees. She cannot say it works for everyone, but she says when it works, it works well.
The procedure can add a couple of hours to what is already a lengthy surgery. It is often covered by insurance under a law that guarantees women the right to reconstruction after mastectomy, and studies are being done now to help analyze outcomes.
I’d really just love to feel a hug, or my little girl cuddled up against me on the couch.
Of course, outcomes are in many ways subjective. Only the patient can tell how they really feel, and so like everything else along the breast cancer journey, choosing how and even whether to do reconstruction is a very individual choice. Each of us must make those decisions along with our doctors.
Dr. Chen hopes more surgeons choose to learn about the possibilities of Resensation and wishes for a day when all women are able to feel fully whole after mastectomy.
For me, I’d really just love to feel a hug — or my little girl cuddled up against me on the couch. If it doesn’t work, life certainly goes on, but like I have so often in the past year, for now, I am hanging on to hope.