Tara begins by telling us the painful story of losing her mother to breast cancer when she was only eighteen. In an ironic twist of fate, Tara’s mother lost her own mother, Tara’s grandmother, from breast cancer at the same age. Having experienced this, she describes it as a “dark cycle that would just keep happening”. This is Tara’s story of lost breast sensation after mastectomy restored 10 years later.
With other family members who had a cancer diagnosis, Tara was encouraged to have genetic testing by her then partner. She had no idea at the time what having genetic testing would actually mean and how it would change her life if she tested positive. When the results came back that she was in fact a carrier of a BRCA gene mutation, she went to see a surgeon to discuss what her options were. She was given two options.
She was informed she could remain vigilant and get regular screenings. Tara knew her mother was vigilant and yet, she lost her to breast cancer. Not being comfortable with this choice, Tara asked what her other option was. The surgeon told Tara the other course of action was a double mastectomy. Tara was certain she misunderstood her question. She rephrased the question and asked the surgeon, “No, no, for the gene. Not for if I have cancer.”
As a young woman of 28 years old, this seemed so drastic to Tara. Losing her breasts at a young age was hard for her to wrap her mind around. But she heard her Mother’s voice, telling her to do whatever she could to mitigate the chances of her getting breast cancer. Coming to terms with her decision, Tara had a double mastectomy in 2008.
Tara’s First Reconstruction with Implants and Loss of Sensation
Her surgery took place after consulting with a plastic surgeon. The options discussed were using implants, silicone, or saline-filled implants. She was encouraged to use silicone over saline. Her plastic surgeon described them as looking “more natural”. There was no discussion of nipple sparing or DIEP flap surgery. Wanting to look as natural as possible at the young age of 28, she went with his recommendation and chose silicone.
Discussion with her surgeon about “losing some sensation” wasn’t something she worried about at the time. Her first priority was greatly reducing her risk of getting cancer. She was told loss of sensation was a possibility but felt she could deal with this type of collateral damage. Greatly lessening her risk of breast cancer was her main focus. She took care to heal after her first reconstruction and was extremely protective of her new implants. Tara describes it as building a protective shell around herself not wanting anything to happen to her breasts, her numb reconstructed breasts.
Being numb made her feel disconnected from that part of her body. Tara felt her body was almost segmented with a gray area in the middle being her numb breasts. She states, “I didn’t feel like a solid whole person”. It was difficult for her to integrate this feeling of being segmented into her reality.
Tara’s Second Reconstruction and Experience
With her cautious and vigilant care after her first reconstruction, Tara’s implants became compromised. One day while getting dressed, Tara noticed a change in how her breasts looked in her bra. One seemed to be spilling out of the cup of her bra more than the other one. With noticeable asymmetry, she felt it was important to go for imaging. To her surprise, after all her attentive care, her implant had ruptured. She was thrown back to the same “ticking time bomb” feeling she had when she heard she had a gene mutation. Tara was fearful of the unknowns. Could the silicone rupture affect her body? It was time to see another surgeon to have follow up care to find out what next steps were.
Tara was referred to a surgeon in Manhattan who was also a microsurgeon. She felt an immediate connection to this new female microsurgeon who understood Tara’s own feelings and concerns about her breasts. A new discussion took place between her the new surgeon. It was a discussion about a different kind of surgery Tara was not given the option for in 2008. Her microsurgeon told her about DIEP flap, using Tara’s own tummy skin, underlying tissue, and blood source to create a soft, warm new breast.
The idea of using her own tissue felt safe to Tara. What was even more surprising to Tara is when her surgeon told her she was going to attempt to reconnect some of her nerves. Again, she was focused on correcting the implant issue so the thought of reconstructing nerves at the time was secondary to Tara. I love her analogy. She said it was like someone telling her, “Ok, well, you’ll get a dipping sauce with your sandwich”.
The Resensation Technique: Sensation Restored 10 Years Later
Because Tara lived with not having sensation for 10 years, she could not imagine what it would be like to have feeling back in her breasts. She was cautiously optimistic about the prospect of regaining sensation. Tara’s microsurgeon used the Resensation technique to reconnect the nerves that were cut during her mastectomy to the nerves in the flap used to form her new breast using allograft nerve tissue. Over time, the nerves regenerate, potentially restoring sensation and becoming a part of your own body in the process.
Once again, she gave herself the time she needed to heal from another breast reconstruction surgery. Tara’s surgeon informed her sensation would not be immediate but would happen over time since nerves grow at approximately 1 mm per day. While watching television one day Tara suddenly felt a quick twinge of pain in her breasts. That was the day she new her nerves were regenerating. It was a wonderful feeling of reawakening for her. With the return of sensation, she says she finally feels a sense of integration, of wholeness that she never imagined being reunited with again.
I wrapped up our conversation by asking Tara to share her sage advice for other women who are faced with the loss of breasts from mastectomy and loss of sensation. She very resolutely says to do your homework. Utilize the resources available like the Resensation surgeon locator to research surgeons who use the nerve allograft to potentially restore breast sensation. Find a microsurgeon who is interested in getting you back to feeling as normal as they can before you were diagnosed or began your previvor journey like Tara.
You can watch the entirety of the video here. I am grateful to share Tara’s story.
This blog and testimonial are brought to you in sponsorship with Resensation by Axogen.