For years, Tori Geib told doctors her back hurt, but none of them took her seriously.
After seeing three rheumatologists for the chronic condition, Geib was left frustrated. One doctor said she didn’t know what was causing the pain but could potentially be fibromyalgia. Another suggested the pain was a manifestation of depression and suggested she started anti-depressants.
A month later, after ending up in urgent care due to the pain, another doctor suggested she might be overdoing it at work — but Geib was convinced something more sinister was at play.
“I almost felt like I was gaslighting myself,” Geib wrote in an open letter for Health.com. “Was this all in my head? Surely all these doctors couldn’t be wrong; after all, they were the experts. But deep down, I knew this was real, physical pain. I didn’t know what was causing my back to hurt so badly, but I knew one thing: I didn’t feel like myself.”
It wasn’t until she found a mass on her side and had it checked out that doctors realized something more serious was at play. After undergoing a mammogram instead of celebrating her 30th birthday and then later a biopsy, she was diagnosed with metastatic breast cancer.
“I went from hearing, ‘You’re too young to have breast cancer’ to ‘You’re dying of breast cancer and there’s no cure,'” Geib wrote.
Although the prognosis for the disease is terminal, Geib found validation in finally getting a diagnosis.
“When I learned that the terrible pain in my back was due to metastatic cancer in my spine (and not fibromyalgia or overdoing it at work, as my previous doctors believed), I first wanted to hug my oncologist,” she wrote. “Not because I was excited to have cancer, but because someone finally gave me an answer that explained why my back had hurt so much, confirming that it wasn’t all in my head.”
As she wondered about the what-ifs on potentially being diagnosed earlier, Gieb discovered something she described at “chilling.”
“A note had been left in my medical records by one of the doctors I had seen for the back pain,” she explained. “It mentioned that ‘suspicious lesions’ were found on my spine and hip bone after a scan I had a year earlier. No one ever followed up or told me about this.”
After two years of palliative treatment, Geib is still living life to the fullest and works for patient advocacy groups as well for as funding and awareness.
“Maintaining my quality of life is the biggest thing for me now,” she wrote. “If I know quantity is going to be short, then the time I’m going to have is going to be good time. I try to resist living in three-month increments; I’ve actually planned a trip to Europe soon.”
As for her advice to others, Geib’s message is clear: “Advocate for yourself.”
“Get a second, third, fourth, however many opinions you need so you feel comfortable. Ask for copies of all your reports, tests, and scans, so you can read them yourself and go to your next appointment with questions ready. Bring them to new providers, so they can see what has already been done. Above all, trust yourself; you know what is normal and what is not for your body.”