My NETs cancer journey so far
Hi, sharing my story so that it might be a helpful resource to others.
I’m a 36 M living in Toronto, Canada.
On july 7 i started having chest pain and it became worst over the next 3 days. On july 10 i started getting fever which wont go down even after taking advil. So ultimately ended up in an urgent care where they ran all sorts of tests. Finally in CT scan they found a 8 x 5 x 5 cm heterogeneous mass in my anterior mediastinum and immediately referred me to a thoracic surgeon.
3 days later when we met the thoracic surgeon he surfaced 4 different possibilities based on CT scan results. Lymphoma, Thymoma, overgrown thyroid and germ cell tumor. He ordered a biopsy, pet scan, MRI and more CT scan.
A a couple of weeks later the pet scan results showed the signs of thymic epithelial neoplasm and
With mas SUV max of 8.4. The biopsy results showed that it was neuroendocrine tumor with necrosis but they couldn’t confirm the origin as pet scan didn’t show any mutated cells in pancreas or intestine. Additionally they found a 2-3 cm lesion on liver.
The surgeon after consulting with the board immediately scheduled a sternotomy to remove the mass. The surgery happened on August 10 and they had to cut a 4 x 5 cm big pericardium (heart wall) and 3 x 4 cm big piece of lung. They also removed my thymic gland and took a cluster of lymph node which was stuck to the tumor.
Later in the ultrasound they found 3 different lesions on my liver which they now will perform the biopsy on. Additionally we will find out the origin and grading of the tumor through pathology testing of the tumor.
Right now I’m in a 6-8 week recovery from the surgery and the path results will tell if there is any post op treatment involving chemo/radiation.
Just wanted to share my story in case someone is going through the same and need any help interpreting results and navigating through healthcare or getting there questions answered.
Dont hesitate to shoot me a message in case you need any help.