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Diagnosis Frustrated: How you were diagnosed with NETs?
Neuroendocrine Tumors (NETs) | Last Active: 7 hours ago | Replies (77)Comment receiving replies
@californiazebra Goodness Cali, I am amazed that you have been through SO much. I have had several operations, some serious, but not that would case the amout of change in my body as you have had to go through. I can not imagine what just your diet must consist of, if it can so radically change your body chemistry. Has it been a method of trial and error, or did you have to go to a nutritionist? I am not a good eater. I would rather take a supplement and call it a day. I am trying to do better, but I confess, even my vegetables are in powder form that I add to a daily smoothie. That is one area I HAVE to do better in. It is also why I want my doctor to do baseline testing. You taking the shot gives me real hope. Also, wondering if your breast cancer had anything to do with you having NETs? Was that the primary tumor source? I'm assuming you had a gallbladder issue before taking the injections. (?) That has been one of my fears. My surgeon brushed that off with, "I'll merely remove your gallbladder if it becomes a problem." Sorry if I am asking too many questions. Answer only if you want to. I will not be offended. Thank you for responding. 🫶
Replies to "@californiazebra Goodness Cali, I am amazed that you have been through SO much. I have had..."
@nannybb
Nutrition - I'm answering this question separately so others will see it. I can't eat 95% of the food out there due to dysphagia (chewing and swallowing issues from my neuro issue), one breast cancer med gave me afib and anything with tyramine, histamine, caffeine, etc. will trigger afib so that eliminated most of what I could eat. And then there are food allergies, GERD, diabetes, cholesterol, etc. On top of that, a strong neurotoxic antibiotic caused me to lose my taste and smell permanently 9 years ago so I can't taste what I can eat. Eating is a chore for me, no longer enjoyable. It's a social issue too.
Nutritionist - 3 nutritionists really couldn't help me because of my massive restrictions and their limited knowledge, but I just recently started having conversations with Google AI and what a great find! AI is my perfect nutritionist!!! I can eat bread texture so I'm using muffins as my main vehicle for nutrition as physically eating produce is sooo challenging for me. AI created a recipe for me with my requested ingredients, freshly milled flour (super nutritious -- good for gut), oat bran (good for lowering cholesterol and blood sugar), buttermilk (fluffiness), applesauce, banana, mango, spinach, black beans, just enough maple syrup to offset any bitterness. All the ingredients are blended smooth. Friends tried them and couldn't taste the beans or spinach at all. The texture is amazingly moist and soft and so nutritious!
Then I told AI what else I was eating and asked which key nutrients I was still missing in my diet and we went from there and worked out the perfect, albeit limited, healthy diet plan for me. Give AI a try for special diet issues. Best of luck!
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@nannybb
Hi. No, the breast cancer is not related to the NETs/DIPNECH. I actually had the lung symptoms for about 40 years and even asthma starting in childhood. Was the asthma just part of the DIPNECH, who knows? I have genetic mutations for breast cancer. The 50+ nodules were discovered in 2008 and breast cancer in 2013, the first time. They insisted on the lung biopsy in 2020 when my breast cancer returned to be sure they weren't related and that's when I was diagnosed with NETs/DIPNECH.
My gallstones were first seen on a CT scan back in 1999, so I had those long before octreotide. AI recently told me my gallstones were so large now, they are unlikely to cause a blockage. Sorry your surgeon was so flippant about removing your gallbladder as if that's a walk in the park.