Diagnosis Frustrated: How you were diagnosed with NETs?

@nannybb
Since I’ve been taking octreotide injections for 5 years now, I’m a little fuzzy on details like that. Because I had already been in treatment for recurrent breast cancer for months before I saw the NETs team, I had plenty of CTs, MRIs, PET scans and bloodwork on file already. I’ve also been treated for hypothyroidism for 37 years. I had a gallbladder full of large stones before the injections. The most significant side effect for me has been blood sugar spikes after eating. It shoot’s up in an hour then back down an hour later. I can’t take the diabetes meds since I have a rare demyelinating neuropathy so I’ve actually improved my health habits to fix organically. Octreotide has been amazing for me fixing my respiratory issues. I will never stop it so long as it works and I’m someone that says no to most meds because of adverse reactions. I hope it works as well for you.

@nannybb
Oh, and the only followup for the DIPNECH/NETs has been CT scans at various intervals depending on what they see with nodules, obstruction, etc. I do see an endocrinologist regarding the diabetes. My synthroid dose for hypothyroidism did not change after starting octreotide. Stable. The nodules have stayed pretty stable in size but I have had some new obstruction in the past year. Not really noticeable to me, but it shows up on scans. I’d much rather do an in office injection every 28 days than at home 3x day.

@californiazebra Good to know the monthly is your choice. I need to hear people in favor of that route. I onlt asked for the daily shots to see how I am going to react to it. (Obviously) I've little faith in some doctors here lately. I think because I'm having such pain right now. Thank you for your comment. Appreciate it.

@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. 🫶

I was misdiagnosed ten plus years. When i was it was by someone in gi. The oncologists i first saw weee inexperienced with nets so i searched for a specialist. After three different specialist I found one that spent his career working with nets. He immediately had me do prrt. Which was a game changer. So my advice is go for more opinions until you are satisfied. Time is a factor in a good recovery.

@apain I never heard of that before. That added an unusual challenge for you didn't it? Thanks for sharing. Like you, I struggle with technical terms and acronyms. I care more about learning what stuff is, how is it bad for me, how can I fix it, and what complications come with fixing it. I will learn the technical stuff and acronyms, if they prove to be important to me over time. Learning all of this stuff is challenging enough.

Yes, it was not something I expected. I believe the injections help to keep the hormones from doing something similar again. It’s great to feel good now.

@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.

@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!

@californiazebra I know, right? I have had so many body parts altered or removed I'm thinking of changing my name. 🤣