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High risk surgery. Is it worth it?
Neuroendocrine Tumors (NETs) | Last Active: Mar 29 11:38pm | Replies (40)Comment receiving replies
What is the difference with Atypical Nets. And typical?
This is gig666/ have they say just I. have carcinod , nodules. In lo botttom lower lobes. I went back after my Bronchoscopy the can shower so many tiny chips which referred as baby nets. I go tomorrow for the Pet scan you are using g at UMASS, Worcester to see if it is outside of my lungs . I have had suffered for 10 months of NETs syndrome, flushing, severe stomach pains, and upper abdomen bloating very painful. It concerns me how my lungs !lol like shattered pieces of glass and my lungs have a tightness. Also, my blood l am making to much RBC! That I oncologist thinks it different from my lungs. Help
Replies to "What is the difference with Atypical Nets. And typical? This is gig666/ have they say just..."
@gig666
How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs? I also have lung NETs -- typical carcinoids. Typical are much better than atypical, slower growing, less aggressive.
MIGHT YOU HAVE DIPNECH? I also have DIPNECH which is an even rarer lung condition that causes multiple neuroendocrine tumors that can stay benign or eventually become malignant or turn into lung NETs. I have over 50 scattered across both lungs. When you mentioned you have several tumors including very small ones, that makes me wonder if you also have DIPNECH.
ARE YOU SEEING A NETS SPECIALIST? My pulmonologist and breast oncologist knew little about either so I'm seeing a NETs multidisciplinary team at UCLA. There are many NETs teams around the country. You definitely need one since lung NETs is not treated like your typical lung cancer.
SLOW GROWING - NO SURGERY: My tumors were first observed in 2008, but are very slow growing. That was my first even chest CT. Tumors took 10 years to double in size. 12 years before they were diagnosed. Have probably had them 30+ years based on history of symptoms. I've only had one tumor destroyed so far using non-surgical microwave ablation and it was successful. It was 2.6 cm. The interventional radiologist told me we will do the same to any others that reach 2 cm as they are more likely to metastasize. I will never have any portion of my lung(s) removed (yay!) since tumors are in every lobe.
OCTREOTIDE INJECTIONS: I have also been taking octreotide injections that have been a miracle taking away a chronic cough, constant clear mucus and shortness of breath. It was annoying to me and everyone else. Octreotide also slows growth even more. I still have some SOB, but much improved. I coughed like I had bronchitis for 30 years before that. That is another sign of DIPNECH. Typically diagnosed in middle-aged women who have multiple lung nodules, chronic coughing and SOB. Only a couple hundred documented cases of DIPNECH, but likely underdiagnosed because doctors, even radiologists, are unfamiliar.
Don't worry about the "ground glass opacities" description you've heard. That's just describes a visual appearance on the images as a diagnostic tool for radiologists. There is no glass or anything sharp in your lungs.
Hope this is helpful. Prayers for you.
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Sounds terrible what you are experiencing.
I can relate to some
I have controlled my diarrhoea, pain and bloating by intermittent fasting
Not eating till after 12 each day.
I’m eating a lot of eggs and avocado etc and avoiding processed food. Though I have a cheat day on weekends to share a breakfast with my wife.
Controlling the inflammation i have had for many years is my priority and hopefully keep my tumours under control