Bella’s Malignant Paraganglioma Story

Bella, an Australian living in the UK, shares her experience with malignant paraganglioma, diagnosed after years of medical gaslighting and misdiagnoses. Her symptoms began when she was 15 with severe vomiting, chronic cough, dizziness, a neck lump, and extreme weight loss. Misdiagnosed with anorexia and bulimia, she endured invasive and ineffective treatments for years. Her condition deteriorated until a general physician recognized the seriousness of her symptoms, leading to an ultrasound and eventual diagnosis of a paraganglioma.

Interviewed by: Nikki Murphy
Edited by: Katrina Villareal

Surgery to remove a large neck tumor was extensive, lasting eight hours, and left Bella with stroke-like symptoms, paralysis on one side of her face, and difficulties swallowing and speaking. Subsequent testing revealed the tumor was malignant and had spread. Bella underwent six weeks of intensive radiotherapy, during which she suffered severe pain, hearing loss, and isolation.

Her treatment revealed a genetic mutation in her family that predisposes them to certain cancers. Although she has faced recurring health scares and complications over the years, Bella has worked to rebuild her life. Struggling with identity and mental health post-treatment, she initially turned to partying as a coping mechanism. The COVID-19 lockdown, however, marked a turning point, leading her to seek deeper healing through community support. Bella found solace and strength in a women’s cancer survivor group, which helped her realize the importance of connection in healing.

Now, Bella emphasizes the power of community and advocates for understanding that the challenges of cancer extend far beyond treatment. She encourages others to find support networks and validates the emotional toll of living with and recovering from cancer.

• Name: Bella J.
• Age at Diagnosis:
  • 19-20
• Diagnosis:
  • Malignant Paraganglioma
• Symptoms:
  • Severe vomiting
  • Chronic cough
  • Dizziness
  • Swelling in the neck
  • Low heart rate
  • Extreme weight loss
  • Hair loss
  • Dental issues
  • Vocal strain
  • Persistent pain and exhaustion
• Treatments:
  • Surgeries: approximately 15 procedures, including an eight-hour tumor removal
  • Radiotherapy
  • Physical therapy: for arm mobility and swallowing techniques

TW // Suicidal ideation

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.

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