1. What impact has NETs had on your life?
Being diagnosed with a pNET and MEN1 has had a huge impact on my life and that of my family. The diagnosis almost 3 years ago was devastating and life changing. I had 12 months of treatment (9 rounds of chemo therapy and 4 rounds of Lutate) followed by a huge surgery almost 18 months ago which has been gruelling to say the least. The recovery has been long and very slow and I live daily with the many implications of having multiple organs removed in the 15 hour surgery. I am now a type 1 diabetic and struggle to gain weight after losing 25kg. This has implications on my energy levels, so I need to manage my days and weeks. I have to be quite strict on my diet also as my body does not tolerate certain foods very well and I need to keep a close eye on my blood sugar levels. There are a number of medications I need to take and continue to be monitored via scans and blood tests.
2. What drew you to become involved in the CAG?
While being very unlucky to have been diagnosed with a rare cancer, I was also very fortunate to have access to some great medical staff and facilities. I believe this made a huge difference and allowed for a successful outcome. However, many aren’t so lucky. Diagnosis is still often complicated, incorrect and late for many NET patients. Further, access to scans, more specialised staff and the best treatments is all too often a more unlikely outcome for NET sufferers. I would like to be able to be able to make my experience the normal experience.
3. What advice would you to give to a newly diagnosed patient? What has been most helpful to you in your NET experience?
Remain positive and follow your gut. You know your body better than anyone. Search for the best medical staff (especially in a multi-disciplinary format) and treatments. Utilise the Unicorn Foundation for reputable information and support. Utilise a holistic approach toward recovery ie trust the best medical staff to make the right decisions for you but combine it with things such as a healthy diet, moderate exercise as well as things such as yoga, meditation, acupuncture etc. Keep your mind and body healthy to focus on fighting your illness.