My husband

I answered on your other thread

Hi Angela,

How are things? You may have heard of it before now but incase you havent, the NETpatient Foundation are a good place for information and support. My husband has NETs also. It's been 6 years since his diagnosis, different primary and sights of tumours. If you need any further advice or information please don't hesitate. 

Regards

Angela

Hello Angela,

I am so sorry for the difficulty you and your hubby are sharing.

I have an ileocecal primary neuroendocrine cancer with mets, diagnosed for nearly a year.

Three things to think about:

1- Neuroendocrine cancer is not like other cancers. Its course and its treatment are different, and what can sound like a horrible diagnosis might not be as devastating as it sounds. I have NET friends with stage 4 metastatic disease who are around 10 years after their initial diagnosis. Don't measure what might happen with neuroendocrine cancer by what you've heard about other cancer. Don't think this cancer will behave the same as other cancers do, because it's different.

2- Neuroendocrine cancers are often not curable, but that doesn't necessarily mean not treatable. Don't focus on cure- focus on treatment. There are treatments.

3- NET Patient foundation. Speak to the nurse there, get info from their site- they specialise in Neuroendocrine cancer and helping people like us to live well. The nurses there are knowledgeable and loving. You can get a "patient handbook" that explains most things, in simple language. 

I wish you both well- a NET diagnosis is scary, and hearing there is extensive disease is also scary, but not everything is as it appears with a NET. Have hope. 

You can message me if you need a friend to listen.

Beth

Hi there I’ve just read your post and wanted to contact you,how are you feeling? My husband was diagnosed with a NET in his pancreas with mets in his liver In September 2019,he’s having chemo by tablet form every day with a monthly injection also and he’s had 1 scan which showed a slight reduction in size,he’s due another scan in the next few weeks so we won’t know how things are until then but I would love speak to others in the same position as me.xx