Brydie’s Story

Name: Brydie

NET Type:

  • Paraganglioma

Up until the 23 May 2013, I was your typical working woman juggling home life and a career as a Lieutenant in the Royal Australian Navy.

Home life was wonderfully busy with my husband Mark working away a lot and having our beautiful 4 and 2 year old boys to care for. I was healthy and generally fit except for the ever present headaches and suffering ‘panic attacks’ with some odd symptoms – which started 13 years previous.

On the 22 May 13, I had an appointment with my GP and casually mentioned my ‘panic attacks’ that had started occurring in the middle of the night and waking me up, as well as a ‘sore spot’ on my scalp. My lovely doctor did not dismiss my symptoms like so many before her and sent me off for a head CT. It turned out the ‘sore spot’ on my scalp was actually where a 5cm tumour that had eaten through my scalp. I was sent immediately to a neurosurgeon who removed it on June 13. It was the pathology of the tumour that provided my metastatic paraganglioma diagnosis. After further testing and multiple scans, my primary tumour was found in the retro-peritoneal and I have various lung and bone lesions.

I was fortunate enough to firstly live in a city that provides Lutate treatment (Peptide Receptor Radionuclide Therapy – PRRT), and secondly be accepted to the Lutate program. My treatment for Lutate started on 4 Sep 13 at the Queen Elizabeth Hospital in Adelaide. I endured four rounds of the PRRT treatment as well as the accompanying chemotherapy finishing in April 2014.
I am yet to see the 12 month scan comparison report, however from my scans taken at the completion of treatment, things were looking promising with a 20% reduction in the primary tumour and the secondary lesions looking stable.

My life has changed enormously since that first doctor’s appointment. I am in the process of leaving the Military and concentrating on my family and my health. In many ways, I am thankful of the diagnosis as it gave me cause to assess my life and, in doing so, make me realise what was really important in life.

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More patients diagnosed with Paraganglioma

Michele, WA

  • Paraganglioma
My surgery was a success. It went for 10 hours, they had previously predicted it could take up to 15 hours. I was in the ICU for 2 days then I was on ward for nearly 3 weeks. I went back to work on a part time basis after 6 weeks. In hindsight I should have given myself longer to heal.

Ros, TAS

  • Paraganglioma
After testing positive for SDHB the rest of my family, including a large extended family, were tested. 75% of my (extended) family members tested are positive for SDHB, which is around 25 people.

Michelle, NSW

  • Paraganglioma
What I have learned is appropriate referral is so important. For me a partial diagnosis came 3 years after my 1st hypertensive crisis. Full diagnosis and treatment took another 4 years.

Tayla Barreau, SA

  • Paraganglioma
Our eldest daughter Tayla had an ultrasound, MRI and CAT scan just days before, all which detected a mass in her abdomen, this warranted further investigation by the hospital. Even more bizarre was the fact that she had found this lump herself.

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