Grapefruit-sized spinal tumor misdiagnosed as sciatica: 23-year-old's cancer journey

A 23-year-old student from West Yorkshire was repeatedly told that her severe lower-back pain was sciatica, only to learn years later that a grapefruit-sized tumor on her spine was the real cause. Leah Kalkan began experiencing pain toward the end of 2021, managing symptoms with painkillers as the discomfort intensified over time. By 2022, during a trip to Turkey with her father, the pain became debilitating, described as a pulsating ache from the lower back down the leg and into the foot. She said she could not sit, lie down, or walk, and basic measures such as paracetamol and heat patches provided little relief.

A private MRI in Turkey—paid for by her father—raised concerns about a possible herniated disk and led to further pain relief rather than a clear diagnosis. When she returned to the United Kingdom, the pain worsened, and she sought help repeatedly. An ultrasound offered at one point failed to identify the underlying problem, and she was told there was nothing alarming. Her partner and family pressed for more tests, but she reported feeling dismissed and told to return to work or to manage with medications.

The turning point came after a private consultation with a neurosurgeon who reviewed scans taken abroad. The specialist expressed immediate concern that the lump, which had grown to the size of a grapefruit and occasionally reddened, warranted a biopsy. In December 2023, following a NHS biopsy, Ms Kalkan was diagnosed with Ewing sarcoma, a rare and aggressive form of cancer. The diagnosis came after years of pain and numerous consultations that had failed to identify a serious condition. She recalled asking her consultant repeatedly whether she could be cured, but said the lack of a definitive answer only intensified her fear as the cancer progressed.

Treatment was intense: she underwent 14 cycles of chemotherapy and 33 proton beam therapy sessions. The Teenage Cancer Trust supported her throughout the ordeal, and she completed treatment in July 2024. Since then, she has returned to her studies, pursuing modern languages and English with French. Her story is now being shared to raise awareness and funds for the Teenage Cancer Trust, which funds nurses who support thousands of young people with cancer each year.

“I would always look forward to seeing the Teenage Cancer Trust nurses. They made me feel comfortable and helped me smile as much as I could,” Ms Kalkan said. “Being treated around other young people gave me the opportunity to meet some of the strongest, kindest and most understanding people in my life.” She added that the support helped her cope with the isolation and fear that accompanied such a late diagnosis.

Ms Kalkan emphasized that her experience highlighted gaps in how young patients with cancer are assessed. “If I could take myself back in time, I would have kept pushing for a diagnosis,” she said. “My symptoms were quite obvious, and any lump should be alarming. I would encourage people to trust their bodies and keep going back to the doctors to push for an answer.” She also urged greater education for GPs on signs of cancer in young people.

Earlier this week, the NHS in England launched Jess’s Rule, named for Jessica Brady, who died of cancer after doctors dismissed her concerns on more than twenty occasions. The policy directs GPs to rethink a diagnosis if a patient presents with the same symptoms on three separate visits, a move Health Secretary Wes Streeting said aims to prevent similar delays that can have serious consequences. The rule comes amid broader concerns about diagnostic delays and access to timely imaging, particularly for younger patients who may present atypically.

Leah’s experience has drawn attention to the importance of timely imaging and accurate interpretation of scans, regardless of where tests are performed. While she acknowledges that private consultations and cross-border testing contributed to a faster diagnosis, she notes that the NHS ultimately confirmed her cancer, and the support she received during treatment was indispensable.

Now back at university, Ms Kalkan continues to advocate for awareness and fundraising. The Omaze Million Pound House Draw partnership with Teenage Cancer Trust is expected to bolster funding for specialized cancer nurses who support thousands of young people facing cancer each year. Her story underscores the reality that timely diagnosis can be a life-saving factor, particularly for young adults who may not fit traditional cancer profiles.