Stop Calling Yourself ComplicatedFebruary 16, 2023
“My journey kind of really took off in 2020, and I had really no intentions of doing any of this,” Melissa began.
Ten years before her own mastectomy and reconstruction story began, Melissa found herself alongside her mother, who was diagnosed with breast cancer in 2010. Melissa was in the process of finishing her bachelor’s degree at the time and used her flexibility as a student to help her mother with chemotherapy and other medical treatment. At the time, her mother tested negative for a BRCA gene mutation.
In 2014, Melissa started finding lumps in her own breasts. Her maternal aunt was also diagnosed with breast cancer. Updated genetic testing uncovered a harmful PalB2 gene mutation. Melissa underwent genetic testing in 2020 and found that she, too, carried the mutation. Melissa also has cerebral palsy (CP), which limited her options when it came to surveillance. At that point, she and a genetic counselor decided that risk-reducing mastectomies would be her best option. Melissa was living in Albany and working as a mental health counselor at the time.
“I stepped away for what I hoped would be a quick and easy bilateral mastectomy with reconstruction in the Albany area. I had asked about DIEP, but my surgeon said because of all my spasticity and neurological conditions I was not a candidate,” she said.
She was concerned about how the spasticity that came with her CP might impact breast implant reconstruction, but her surgeon assured her that it would not be an issue.
“It was almost like he dismissed my CP, like it didn’t exist, like ‘why are you trying to go against implants, you’re just like everybody else.’”
Melissa explained that her disability is not necessarily visible at a glance, but that does not make her care typical.
“My CP is pretty mild. I’m not in a wheelchair, and I look like a normal 34-year-old, but I am far from it. I think I have 13 specialists. Through the years, I’ve tried to be normal like my peers, but then something in my body breaks.”
Despite her trepidation, Melissa said she ultimately chose to trust the person with the medical degree. She underwent bilateral mastectomies with expander-implant reconstruction in November, 2020. By the middle of January, she felt that something was wrong. Her surgical team insisted any contour abnormality was an optical illusion. She decided to start doing some independent research.
On January 25, 2021, she joined an Instagram Live session hosted by The Breasties, which featured Dr. Jonathan Bank. She was hoping that Dr. Bank would shed some light on why she was not a candidate for a DIEP flap. When the topic did not surface, she emailed him. She was scheduled for a virtual appointment on February 1, 2021.
In the intervening week, Melissa’s concerns about her implant proved well-founded: she was hospitalized with a life-threatening infection that ultimately resulted in an emergency explant surgery. Even with a severe infection, Melissa had to fight for care. She was initially sent home with antibiotics as doctors insisted that she was overreacting.
Melissa attended her virtual appointment with Dr. Bank with a Jackson-Pratt drain still in her body from her prior surgery. She said her experience with him stood in direct opposition to what she had just endured. Not only did he explain that her spasticity did not make natural tissue reconstruction impossible, he addressed her concerns, but also encouraged her to change the way she was thinking about herself.
“He was like, stop calling yourself complicated. He changed the narrative. He kept telling me, I just have to think outside the box. I just have to approach it differently. And I came out feeling whole, so I don’t know what he did that was different, but I feel great. He has an infectious personality, he’s just awesome.”
Melissa chose to travel from her home in Vermont to undergo a revision procedure with Dr. Bank in May, 2021. He removed her expander implants—which had been flipped by her spasticity as she suspected—and replaced them with SHAEP flap breast reconstruction. Melissa said that Dr. Bank’s bedside manner made the decision to come to NYBRA for her care easy.
“I felt like every step of this journey I had to fight. When I found someone who was going to listen to me and not treat me like a crazy person, I was like, sign me up. Where do I have to go?”
Dr. Bank coordinated with medical practitioners in Melissa’s home area so that she was able to recover in Vermont. Full Circle Physical Therapy’s Diana Tjaden even worked with Melissa’s husband, who is a physical therapist himself, so that he could help her with exercises at home.
Now that she has recovered, Melissa said that she hopes that other patients find the strength to self-advocate as she did.
“My story is in the medical weeds. I had to fight to get where I got, and I didn’t take no for an answer. People with chronic pain, people don’t want to deal with you. It was the infection that made me feel like it was safe to ask for somebody else. I think it would have taken me longer to fight to get a second opinion. I want other people to know that you can ask.”
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