For Lynette Hall, a diagnosis of breast cancer in the fall of 2010 wasn’t a complete surprise. Her mother had died of the disease at age 36, when Hall was just 8 years old. Other women in the family had also suffered from breast cancer. From then on Hall and her siblings—all eight of them—were taught to be diligent about self-exams and screenings.
“It was something I was raised with,” says Hall, 51, of Solvay. “We were all coached about checking. To this day, my father will call us and say, ‘Did you make your appointment for your mammogram?’”
So when her annual mammogram showed a shadow on her chest wall, Hall had already considered her options for treatment. Although her cancer was found early and she was given a Stage 1 diagnosis, she wanted to avoid the chance for reoccurrence. “Bottom line, we had decided that I would do the full bilateral,” she says, using the medical term for a double mastectomy.
Hall underwent surgery the next month, and it was successful from a pathology standpoint. Follow-up chemotherapy was not necessary. But she had also decided to undergo implant reconstruction at the same time, and this proved more difficult. She wore expanders for several months to make room for implants. Her recovery was hindered by numerous infections.
The following February, Hall received her implants. But her slim build made it impossible for her to support them, and she struggled with constant pain. She tried to get insurance coverage for another surgery, but it was initially denied—deemed a cosmetic procedure. For months she tried to talk herself into “putting up with it” or giving up on the idea of a successful reconstruction. “By the end of 2011, I had decided that it was time to move on.”
But Hall’s husband, George, knew better. For more than 20 years he had known his wife as a strong, no-nonsense woman who always seemed to know how to get what she wanted. He wasn’t about to let her give up on the idea of feeling comfortable with her own body.
“She’s strong as an ox,” George says with a laugh. “She’s always there for her family; she’s great at her job. I wasn’t going to let her quit, or slow down, when it came to getting what she wanted for herself.”
Through a mutual connection, George contacted Beth Baldwin of the Carol M. Baldwin Breast Cancer Research Fund of CNY. Baldwin, Carol’s daughter, put the couple in touch with Dr. Michael Curtis, who, at the time, was a plastic surgeon and assistant professor at the Upstate Medical University Regional Oncology Center. Baldwin told the Halls not to worry about the cost. “Dr. Curtis was willing to do whatever he needed to do—whatever was right,” Hall says.
Hall’s insurance company ultimately did cover the second reconstruction surgery, a procedure that can run anywhere from $12,000 to $14,000. And she is clear that the problems she encountered were not caused by anything the original surgeon did wrong. But her story is an example of how important reconstructive surgery can be in the larger picture of the healing process, and how financial struggles and red tape can impede women from getting access to this aspect of their care.
“My advice is to keep asking questions,” Hall says. “There are people out there who can help you work through the insurance issues.”
Curtis, who recently relocated to St. Louis, says only about a third of mastectomy patients opt for reconstructive surgery. Some are content not to undergo reconstruction, but Curtis believes it should be a matter of choice—and not the insurance company’s choice, either. “This is not just about cosmetics anymore, yet there is a huge access issue in reconstruction,” he says; this despite numerous studies that have documented the positive impact reconstructive surgery can have on the self-esteem of cancer survivors.
Noting cases like Hall’s, Curtis says the insurance industry needs to keep up with the advances that have been made in this field. Every case is different and some may require follow-up surgery. “There are multiple techniques that we use now, which have been developed in the last 10 years,” he notes. “You can tailor to the patient, dependent on what their particular needs are.”
New York state has made recent progress in advancing legislation that improves coverage and patient education for reconstructive procedures. A law was passed in 2011 that requires physicians to inform patients of their reconstructive options prior to mastectomy surgery. In August 2012, the state Senate passed a law that requires health insurance companies to cover reconstructive procedures following partial mastectomies. Coverage for reconstruction for full mastectomies was enacted in 1998—albeit with conditions.
“The reality is this is a long-term process,” Curtis says. “Women who undergo reconstruction can still have issues down the road. Patients will see me forever, if necessary.”
Hall says the ability to preserve their self-image enables survivors to feel more at ease in their personal relationships following treatment. For her, that included the relationship she has with her husband. The couple has been married for 16 years, and has been together for 22. She explains that breast cancer survivors don’t want to be defined by their diagnosis.
Topic of Cancer
Today, Hall is back to feeling like the can-do woman she has always been. And she admits that part of that self-confidence comes from being able to look in the mirror and see the likeness she has always associated with her self-image. “Am I the same as I was before cancer? No. But the surgery was a success: It’s great,” Hall says.
There are aspects of the reconstruction process that Hall wishes physicians would handle differently, and for those reasons she’s not sure she would do it again. For example, she says she was not told that sensation at the surgery site would be so different. Reconstruction also changes how she does certain physical tasks and how she sleeps.
With her extensive family history, cancer will likely be a part of Hall’s life for a long time. She will remain on Tamoxifen—a drug used to block the reception of estrogen in certain cancer cells—for another three years. Her sister, Sharon, has also battled breast cancer, and is now doing well. And Lynette has become more involved in breast cancer awareness—sharing her story when asked, and doing what she can to bring attention to the work that the Baldwin family has done to help so many.
“When you meet them, it’s easy to see why they have been so successful with the foundation,” Hall says. “They are so enthusiastic; you just want to be around them. You want to help them.”
Hall says she has been approached by other women who were recently diagnosed with cancer, asking what they can expect. She gives an honest but optimistic overview of what they are about to go through.
“You can talk to your friends, but they can’t tell what it’s like unless they have gone through it,” Hall says. “Mastectomy is not fun: It’s a big surgery. It’s a lot to go through and it changes you forever. But it’s not a death sentence. More and more people are surviving and living with this disease. You can survive.”
Lynette’s two sons, Tom, 29, an Air Force reservist, and Dunham, 14, a sophomore at Solvay High School, have grown up with the knowledge that there is a genetic trigger for breast cancer in their family. Dunham was often right there with Lynette and George for key doctor visits, and helped Lynette when she was recovering from surgery. Hall says she and George thought it was important that Dunham have the opportunity to ask the doctors any questions he had.
“My doctor talked to Dunham and explained that this is not a disease you have to die from,” Hall says. “My son was phenomenal.”
Dunham says he would have thought it unusual if his parents had kept him in the dark about his mother’s diagnosis. “We’re a team and we’re just strong,” he says. “I felt glad that I was involved.”
Dunham says he took the “bad news and the good news” and focused on how his family would move forward. His father always addressed Lynette’s diagnosis as a temporary hurdle—a bad chapter they would overcome together. It’s a strategy he would recommend to other families facing cancer diagnoses.
“It’s about teamwork,” Dunham says. “It’s important to be open with each other—talk about the concerns and fears you have. Most importantly, ask questions.”
Keeping daily life as close to normal as possible was important to the Halls’ recovery and Dunham’s emotional well-being. Hall credits her husband with keeping the mood upbeat and the household fully functioning.
“For a good year, it was an emotional roller coaster,” George Hall says. “I had to be strong. My role was to keep giving positive reinforcement, and to keep things light. But there were times—one day I just broke down. I came to a point where I was overwhelmed.”
The affectionate couple agrees that their long ordeal has made their relationship stronger. They are grateful that Lynette is doing what so many other survivors are doing: living without letting cancer define them.
And George Hall is not at all surprised. “She never complained, never
said ‘Why me?’” he says, still awed by the determination his wife
showed. “There was a never a ‘woe-is-me’ time. She was just thankful for
the help of her doctors, our family and friends, and people like the
Baldwins who do so much for people fighting this terrible disease.”