What impact has NETs had on your life?
My diagnosis of Neuroendocrine Cancer came as a complete shock. I had been experiencing what the doctors called “non-specific symptoms” for many years, but nothing which was impacting heavily on my lifestyle. I finally demanded of my GP that he investigate more thoroughly.
An abdominal Ultrasound showed an area of concern in the Liver and a recommendation for an abdominal CT scan. It showed nothing in the liver, but areas of concern in the bowel, which lead to a colonoscopy, then a right-hemicolectomy to remove a Neuroendocrine tumour from the terminal Ilium.
A couple of weeks after surgery, a referral to a liver specialist revealed metastases which lead to more surgery.
A scan six months later revealed a hot spot in the right breast. “Let’s watch and wait. It couldn’t be a NET . . . not in the breast”; but it was, which called for more surgery.
So, the short answer to the question is the impact has been huge for myself and my family. So many scans, blood tests, surgeries, follow-up visits, second opinions and finally, medication. I wasn’t sick but I did have cancer. What a contradiction that is!
What has been most helpful to you in your NET experience?
The Internet has been most helpful followed closely by the love and support of my husband Andrew and my family.
I discovered a UK site for NETs and finally emailed them and it was them who told me about the fabulous NeuroEndocrine Cancer Australia. The personal, anecdotal information and the support from all the members of the group has been invaluable. Apart from learning about treatments and outcomes, I have felt that not only am I not alone with this weird disease but that I’m not nearly as badly affected as so many others.
I feel compelled to add that even after three years of surgeries and follow up visits to specialists and hospitals, I have never been advised of the existence of NECA.
What advice would you give to a newly diagnosed patient?
I would advise a newly diagnosed patient to do their own research on reputable medical websites and not to be fobbed off with “this is a slow-growing cancer. Just go and live your life as normal”. That is what I was told.
I’d also advise joining a support group if available in their area, but certainly using the Facebook group for information and support.
