Rare Case of NETS

Rare Nets 2

My brother was diagnosed with Neuroendocrine Cancer in 2011. His initial symptoms were moon like face, unusual weight gain and skin like tissue paper. After a trip to the GP (which took a long time due to the fact that he’s of the male species) he was diagnosed with Cushings Syndrome. The Cushings Syndrome was due to an undiagnosed tumour over producing the hormone ACTH. In October 2011 he underwent surgery to resect this tumour fromhis thymus. Although this was successful and he stayed cancer free for almost 2 years, they were unable to take away several cells which had infiltrated into his heart membrane.

In September 2013 he was told the cancer had metastasised, which we now know is throughout his lymph system. He underwent a few rounds of chemotherapy and was lucky enough to receive a grant for a drug called Everolimus. However these treatments had minimal effect on his tumour growth and he made the decision to cease all therapy. He is now enjoying a wonderful quality of life. He is able to work full time and is feeling stronger every day without treatment.

I am forever inspired by his attitude to this very rare disease. His decision to continue without treatment is a very personal one and I respect his decision. The truth is there is no cure for this rare disease and I am devoted to raising awareness so that in the future others are not left in this impossible position.

Live in the now.

  1. The quality vs quantity debate. Having just started chemo for my NETs it’s such a big question. In the 2.5 years since my diagnosis this is the worst I’ve felt and the ‘I hope it’s worth it’ thought is my companion constantly having enjoyed a great quality of life till now. Good on you for supporting your brother. I wish him a long life and both of you lots of good times together

  2. dear friend
    how is ur brother now. if he ever needs anyone to talk to will be more than happy. i have suffered the opposite of cushings – called as empty sella syndrome. but i too had moon face and other complications. i too decided to stop all treatments and do take chinese, or homeopathic or alternative medicines only when required. i am much better now. i live in melbourne.please drop an email….when u feel like. god bless. lots of luv to all. keep well. regards sarita