The Cracks That Make You Stronger – Betty’s Path to NYBRAJanuary 5, 2023
“They say, you put one foot in front of the other, even if the world is cracking behind you. And I’ve been putting one foot in front of the other,” Betty said.
The world began to crack behind her in August of 2020, when her brother-in-law died of cancer. Betty said her sister had not been feeling well, either, though they collectively chalked it up to exhaustion.
“She herself had said she wasn’t feeling well, but she’d been sleeping at the hospital for months and so it was all explained away.”
Unfortunately, Betty’s sister’s symptoms were not so simple. She had already had cancer over a decade earlier. As her fatigue continued, she consulted her oncologist. The news was devastating: she was diagnosed with cancer of unknown primary. Betty traveled to Texas to support and care for her.
“With all of my nursing degrees and all I’ve done, it was kind of this watershed moment where I knew, ‘this is what I have to do.’ It felt good to do something for her. Still with COVID it was very crazy. That first week, I just sort of stayed in the hospital 24/7.”
Betty lost her sister in four months time. Amid the grief of losing two loved ones, she tried to keep up with her own health. Twelve years prior, Betty had tested positive for a BRCA gene mutation. Close monitoring ensued. In the wake of both losses a screening MRI showed DCIS. Betty said she was not surprised, though she was disappointed that she had not already had risk-reducing mastectomies as she had long intended.
“All along I knew that I wanted a DIEP flap. Even 12 years ago, when they were doing TRAM flaps, I had a friend that did that, and even with the weakened stomach, she was grateful that she had natural breasts and they were warm,” Betty explained.
In addition to the breast cancer diagnosis, Betty found herself dealing with abdominal pain. A CT scan and an upper endoscopy both revealed nothing. She dove into the process of finding a surgical team to handle her mastectomies and breast reconstruction. She settled on a group of doctors in Manhattan and began pre-op testing. That’s when a CT angiogram which was intended to help her surgeon design her DIEP flaps uncovered something unusual; the tail of her pancreas was dark. After additional testing, Betty was diagnosed with adenocarcinoma of the pancreas.
“We were really blindsided by this, and so the breasts sort of had to take a backseat. The next week I had a port put in and went through 12 cycles of chemo in April, then a partial pancreatectomy in August. It’s kind of funny how your mind plays games with you. Here I was with this pancreatic cancer and all I was thinking about was this lump in my breast. It seemed so hard to not be able to take care of that as well.”
Despite the frightening treatment process, Betty’s pancreatic cancer benefitted from early detection and responded well to chemotherapy. It also turned out that her treatment did help to eradicate the DCIS in her breast. That July, a breast MRI showed that the breast cancer had cleared. Learning that provided a welcome instance of relief, though she remained resolved to undergo bilateral mastectomies.
Betty finished chemotherapy for her adenocarcinoma in November of 2021. Her medical team recommended that she wait three to six months before considering breast surgery. She took that time to research her options and engage with the breast cancer community. She discovered BRCAStrong through social media and began to watch some of the organization’s Instagram Live sessions.
“That’s when my eyes opened. I said I really wanted a DIEP flap, but I didn’t know what was involved.”
Betty was particularly concerned about how her prior abdominal surgery and scar from her pancreatectomy might complicate a DIEP flap. She decided that she should consult a plastic surgeon and choose a breast surgeon as a second step. She interviewed a surgeon at the cancer center that was overseeing her surveillance.
“I was sort of taken aback with the approach of ‘here’s what you can do, here are your options, and here’s the plastic surgeon we use on Wednesdays because our schedules line up on that day.’” she said.
Betty tapped BRCAStrong founder Tracy Milgram for guidance; she recommended NYBRA. Betty knew the practice was the right from the moment she filled out an appointment inquiry form. She was able to see Dr. Jonathan Bank in Manhattan that week.
“Immediately, he was just calm and confident, answered all my questions, and really gave me the feeling that this could be done. I just knew that it was sort of an abyss going into my abdomen. This was a vertical scar from the pancreas surgery trying to meet a horizontal scar from the planned DIEP flaps, and I was petrified of that.”
Betty moved forward in spite of her fears. Dr. Bank’s thorough explanations helped to assuage her concerns, as did her involvement in the Patient Empowerment Program. She said that attending Sisterhood of Support meetings helped to vanquish some of the fears time on online forums had bred concerning her surgery.
“Mollie Sugarman’s Patient Empowerment Program—it is just like no one else. I think the first call that I went on there was someone there who literally was like a week out and I was like ‘wow, they’re up and they’re talking.’ I knew that I wanted to do this, there was no question in my mind, but then I was a little freaked out. I just found that I needed to have these conversations. I started coming to all of them. I just think that that is so valuable and really sets the group apart,” she said.
Betty’s surgery went smoothly, and the firsthand conversations she had with other NYBRA patients proved to be an accurate estimation of her own experience. Four weeks after surgery, she was able to sit in the stands at Columbia University and watch her daughter graduate.
While her physical and emotional recovery is ongoing, Betty considers herself to be on the mend. As she moves forward, she said she is committed to paying it forward by encouraging cancer screening patient advocacy.
“I feel like Humpty Dumpty, and slowly but surely I’m getting put back together.”
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