Terri Lynn has a long history of benign breast lumps, but until a few years ago they were mostly just a medical inconvenience. “When I was nine years old I had a ten centimeter mass in my breast the size of a grapefruit that required surgery,” she recalled during a recent conversation, “but the last time I had felt a lump was in my early twenties.” It was just a few years ago, while Terri was working for an insurance company on a large government contract providing healthcare to the underprivileged, that she felt a new lump for the first time in decades. “I was scared to get it checked because there was always something with my breasts,” she added; “but here I was encouraging others to get yearly exams, so I had to go in.”
Roughly two weeks after her mammogram, Terri went to see the breast surgeon who had treated her grandmother and her great aunts, all of whom had breast cancer. “He said with your family history we can do a mastectomy right now without a diagnosis,” she remembered; “I told him: if I get them removed, I don’t want reconstruction because my breasts have been a source of contention for me since I’ve had them. Just take them, I said. My children are grown. I don’t need them and I don’t want to keep going through this.”
In what was unfortunate timing, the company Terri was working with lost its government contract while she was navigating the process. As a result, she was laid off and lost her health insurance, pushing back her surgery until she could find another provider. “For a whole year I knew I had these lumps in my breasts that were potentially cancerous and there was nothing I could do,” she said; Terri applied for state-funded health insurance, but felt as if her hands were tied. “Unless you’re dying, they don’t do much for you,” she stated; “They give you enough to survive, but not to thrive.”
Still trying to get a biopsy, Terri was told that it might be awhile before her insurance would approve the procedure. “I asked if they could put me on treatment due to my family history and they said no way,” she recounted; “I fought with them for an entire year and a half to get it done.” Ultimately, Terri was rehired by her previous company and was able to get back on her old insurance plan, but had to wait another 90 days before she could access her benefits. In January of 2019, over a year after her initial visit, she was able to go back to see her surgeon.
“That’s when I was diagnosed with breast cancer,” Terri said; “I probably had it the entire time, which made me very depressed because, to me, this all could have been avoided if someone would have listened to me originally.” Her medical team recommended a double mastectomy because of her family history, along with chemotherapy and radiation as a treatment plan. On July 8th, she had the surgery, opting out of reconstruction, but unfortunately the cancer was so deep her surgeon was unable to remove everything. “I do still have cancer in my right breast,” she added; “The surgeon told me he got everything he could.”
The pain from the mastectomy was unlike anything Terri had experienced. “It was inconceivable,” she recalled; “There are no words to describe how bad it was.” In addition to the pain, her iron levels were remarkably low post surgery. “I was tired,” she added; “I had black circles around my eyes. I felt like I was literally dying. They couldn’t figure out why it was happening.” Initially, her care team believed she may be bleeding internally, but soon discovered a hotspot on her right thigh about the size of a golf ball, slightly protruding beneath the skin. “It was red, inflamed, and solid,” she said; “At first I thought it was maybe a bite of some kind, but then the same thing appeared on my right arm.” She returned to the hospital for an ultrasound, which showed two large masses. “The oncologist and hematologist told me these masses were taking all of my blood, and that’s why I was iron deficient,” she stated. Terri was scheduled for another surgery the following week to have them removed.
“During this time I had genetic testing done because my aunt was also diagnosed with breast cancer in 2018,” Terri explained; “I have BRCA1 and BRCA2 mutations and what’s called FANCC gene mutation. Because of that I couldn’t have radiation, so my only option was six rounds of chemo.” Yet, she was unable to start treatment until after surgery to remove the two masses. Following the procedure, her iron levels did go up, but she still has deficiency problems to this day.
While she was cleared to start chemo, Terri decided enough was enough. “I had been sick for almost three years,” she clarified; “So I said let’s just get rid of the masses and let me go on with my life.” But when she went in for a follow-up appointment six months later, they found another mass in her abdomen. It was so large that Terri had immediate surgery to remove it. “At this point I’m still not cancer free,” she added, “but I feel better than I’ve ever felt having had that mass removed in January. I have more energy than I’ve had in years. And I have a team of doctors and friends who helped me get to this point. There were days when I didn’t see any light at the end of the tunnel.”
Because of her experience in the healthcare industry, one problem that Terri didn’t have early on was getting a copy of her health records. However, being in the profession, she knew first hand the struggle that other patients had to go through and was prepared to advocate for herself. “Every day I would see people in need of their records,” she recalled; “When you’re on both sides you see it all. It used to be that you couldn’t get your records because they were the property of the doctor, or so they thought.”
Terri remembered a particular experience, however, where her care was inhibited due to a data holdup. “When it came time to have surgery on my breast, they needed to see the pathology report but they didn’t have it,” she explained; “When I went and requested that info from my provider it took six months to get it and the records still weren’t complete. I had been a patient there for most of my life, so every biopsy I had ever had was in that same network. Yet, when I returned later as a patient they couldn’t find those records.”
It’s because of that frustration that Terri became a Ciitizen. “I’m convinced that I would have saved the headaches, the time and probably some money if I had been able to use Ciitizen back then,” she pointed out; “People have no idea how important their records are. You don’t want to have to wait for your records down the line when you need them. To have them all in place is an amazing thing.”
Join Terri and sign up with Ciitizen to take control of your health data and help advance important breast cancer research.