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Living with Neuroendocrine NETS, any advice?
Neuroendocrine Tumors (NETs) | Last Active: Apr 11 12:20am | Replies (111)Comment receiving replies
@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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Thought I would give an update. I just made several trips to Mayo in Rochester. I already knew about the large NET in the liver and after a CT and Dotatate Pet scan they found the primary in the small bowel. It also involves at least 1 lymph node. The liver NET was in the left node and it looks like there are a couple of small ones in the right lobe. After talking to the oncologist and surgeon I decided to go with the surgery over the lanreotide injections. The surgeon said I was a good candidate for the surgery and they should be able to remove most of it. They will remove the liver left lobe, scoop out or burn the small ones in the right lobe, the primary and lymph node in small bowel and anything other ones they find there. Said it should be good results. I will always live with cancer but it won’t kill me. I have the surgery April 8th. I’m feeling more positive than I did before.