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Living with Neuroendocrine NETS, any advice?
Neuroendocrine Tumors (NETs) | Last Active: Jan 15 10:02am | Replies (65)Comment receiving replies
Hi,
My name is Cindy. I was just diagnosed with Grade 2 Stage 4 NET in my liver. From my biopsy they’re thinking it might have started in the midgut. I go to Mayo in February for more testing and to find out about any treatments. My liver mass is large, over 6 cm. The waiting is so hard. I am feeling good right now but, of course, you never know how long that will last. My husband has ALS and I need to be here to take care of him as he progresses. Everything I read online doesn’t give a good life expectancy. Helps to hear what other people are experiencing.
Replies to "Hi, My name is Cindy. I was just diagnosed with Grade 2 Stage 4 NET in..."
@cindypat1 The life expectancy data is flawed. It includes the very old, those diagnosed very late in the cancer life cycle and may include deaths from non-cancer illnesses that can't be separated out from the analysis. When I was first diagnosed it said I had an 11% chance to live 5 years (that was 25 months ago). Both my primary physician and oncologist told me to ignore life expectancy data as everyone's journey is unique. I revive lanreotide every 21 days in addition to the radiation trial I am on for the next several years (have had 2 of the 4 planned infusions, 8 weeks apart). I eat healthy, don't drink alcohol (thank God for gummies) and exercise daily. My advice, stay positive, speak with experts, follow their treatments and programs and enjoy life to the fullest! - Tom
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Hi Cindy, As encouragement…I had a lime size tumor removed from my mid gut (terminal ileum) 11 years ago and I am still here - getting my monthly lanreotide shot every 28 days. I am stage 4, tumors in liver and mesentery but thankfully they continue to be stable. So hold onto hope that you can be there for your husband. Tim