Living with an “Invisible” Cancer: The Challenges of Slow-Growing Neuroendocrine Tumors
A 52-year-old woman in Buckinghamshire, England, is facing the frustrating reality of living with a cancer that, due to its slow growth, cannot currently be treated. Kerie Ivory has been diagnosed with small bowel neuroendocrine tumors that have spread to her lymph nodes, liver, spine, and rib. Despite the presence of cancer, she has been informed that she must wait for the tumors to grow larger before treatment options can be considered.
Neuroendocrine tumors (NETs) are a rare group of cancers that arise from neuroendocrine cells, which are found throughout the body. These tumors are often characterized by their slow growth rate and can be difficult to detect, leading to a delayed diagnosis, sometimes spanning years. This slow progression, while potentially offering a longer period without immediate symptoms, presents a unique challenge for patients like Kerie, who find themselves in a state of monitored limbo.
“It’s hard living with a slow-growing, creeping cancer,” Kerie explained. “I am constantly waiting for the tumors to grow big enough to get treatment that is appropriate for me. It’s devastating knowing I have cancer and we are not treating it. A lot of other cancers have the kitchen sink of treatments thrown at their cancer. I’m forced to live with this disease rather than eradicate it.”
Kerie’s journey to diagnosis was lengthy and marked by misattributed symptoms. Her initial complaint, a persistent cough, was repeatedly dismissed as rhinitis, asthma, reflux, or post-nasal drip. Despite numerous visits to her general practitioner, she was repeatedly assured she did not have cancer. Subsequent blood tests revealed anemia, and as her health deteriorated, she was diagnosed with irritable bowel syndrome (IBS).
The eventual diagnosis came after a colonoscopy revealed a tumor obstructing the ileocecal valve, a critical juncture between the small and large intestines. “I kept going back and forth to my GP, who dismissed my symptoms,” Kerie recalled. “By then I was so fatigued I was on my knees. I had to choose whether to eat or have a shower.”
The diagnostic delays highlight a common issue with NETs: their subtle and often non-specific symptoms. These can mimic more common conditions, leading to misdiagnosis and delayed care. Kerie described experiencing significant fatigue and a distending abdomen, noting that she would appear five months pregnant by evening. These symptoms, initially attributed to other conditions, ultimately proved to be indicators of the underlying cancer.
Since her diagnosis in 2012, Kerie has undergone multiple surgeries, including the removal of lymph nodes, sections of her small and large intestine, her ileocecal valve, appendix, part of her liver, and her gallbladder. However, recent scans have revealed the appearance of new lesions in her liver, spine, and rib, requiring continued monitoring and the anticipation of potential future treatment.
The uncertainty surrounding the cancer’s progression has significantly impacted Kerie’s life. In 2022, she was forced to give up work due to debilitating fatigue. “I have to prepare myself for more scans and wait to see if these lesions grow,” she said. “relax knowing We find new tumors forming. I also have to limit what I do every day. Sometimes it may only be one thing in a day. It can catch me unawares.”
The challenges extend beyond physical limitations. Kerie shared how even seemingly simple activities, like swimming, require careful consideration due to the energy expenditure involved in washing her hair. These small, everyday compromises underscore the pervasive impact of living with a chronic, slow-growing cancer.
Kerie’s story illustrates the emotional toll that NETs can take on patients and their families. Her children have struggled to accept the reality of her condition, understanding that it is a lifelong illness with periods of growth and the need for treatment. This highlights the importance of support systems and open communication for both patients and their loved ones.
Neuroendocrine Cancer UK offers patient stories and experiences, recognizing that each journey with NETs is unique. Some stories offer hope and positive outcomes, while others depict the difficulties faced by many patients. The organization provides resources and support for individuals affected by these rare cancers.
The case of Kerie Ivory underscores the complexities of managing slow-growing cancers like neuroendocrine tumors. While the slow progression can be seen as a benefit in some respects, it also presents unique challenges related to treatment timing, symptom management, and the psychological burden of living with a chronic, incurable illness. Continued research and increased awareness are crucial for improving the diagnosis and treatment of these often “invisible” cancers.
