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Anyone else get bloating and abdominal pain from NETS or Lanreotide?
Neuroendocrine Tumors (NETs) | Last Active: Feb 26 7:54pm | Replies (77)Comment receiving replies
Last week was diagnosed with Neuro endocrine tumor "nodules.". It is referred as! Biopsy of carcinoid, tumor in base of both lungs. They say early stage! I do not believe as l have had NETS. that lead ME to diagnose this! flushing, abdominal fullness, eating almost nothing, gained weight. So far not showed up anywhere else, but my lungs. The report says best block for Ancillary Stud? Positive synaptophysin, Chromogranin, TTF-1 (weak) pink cut to keratin. I see a oncologist at UMASS for over 2 years, due to a iron deficiency, had 9 iron infusions, the iron went to 50 but my RBC is super high, she has no idea why. Now this Neuro endocrine tumors " very small, l have had the nodules for 7 years, followed yearly Cat scans. Sept.2023 had MRI of my colon and it showed changes in lung nodules. G.I. track was full of Polyps (9) and diverticulitis inflammation in my large sigmoid. I need guidance, they say roll the dice l am 73! Mass. General Cancer Center l want second opinion, the pulmonary specialist, l see Weds. I see a NPT. Not doctor. Help!!! Surgery they said lower lobes R.L is dangerous complications etc.
Replies to "Last week was diagnosed with Neuro endocrine tumor "nodules.". It is referred as! Biopsy of carcinoid,..."
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Hello @gig666 and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. NETs/carcinoids is still considered a rare cancer diagnosis and it is important to find a place where you can meet others who are traveling on this same path.
On Connect, we have several NETs discussion groups for people with lung carcinoids. I would encourage you to read about their experiences and to ask questions in these discussions. Here ais a link to one of those discussions:
--Anyone Had Surgery to Remove Typical Carcinoids of the Lung
https://connect.mayoclinic.org/discussion/typical-carcinoids/
Here you will meet @californiazebra and @pattirushing. If you click on "Reply" under one of their posts, you can then ask them questions and discuss your own situation more fully.
One of the most important things when dealing with NETs is to have at least one consultation with a NET specialist. These are oncologists who have special training with NETs. They are your very best resource. They can help you develop the best treatment plan.
Mayo Clinic has three locations where NET specialists are available. If you would like an in-person or virtual consultation, here is a link to appointment information: http://mayocl.in/1mtmR63.
If for any reason you cannot be seen at a Mayo facility, here is list of NET specialists worldwide. The U.S. specialists are listed first, by state:
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Have you had any symptoms of coughing, wheezing, etc.?