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I am 75 and have carcinoid tumors NET in lungs
Neuroendocrine Tumors (NETs) | Last Active: May 8 8:12pm | Replies (128)Comment receiving replies
@myboys02
Sorry to hear about your diagnosis, but so glad you have a diagnosis because DIPNECH can take years to figure out since most doctors are not familiar with it. Can't treat what you don't know. Are you seeing a multidisciplinary neuroendocrine team? Very important to be treated by those with experience. I'm 67. I have typical carcinoids and DIPNECH, over 50 tumors scattered across both lungs. Have had DIPNECH symptoms for decades, the nodules were discovered on a CT scan in 2008. I've been taking octreotide injections every 4 weeks for 5 years now. It stopped all the coughing and mucus and helped my shortness of breath. Lifechanging and I'll never stop taking them. Do you have respiratory symptoms?
I was told my carcinoids will not be removed because we need to preserve all the healthy lung tissue we can given the number of nodules I have. If we removed them all, I'd have no lungs. I did have the largest 2.6 cm tumor successfully destroyed with microwave ablation 5 years ago since it was outgrowing the pack and made them fear it could metastasize. After decades, nothing has spread outside my lungs. Good news! We may do more ablations in the future if any nodule behaves differently from the pack. All are very slow growing and I've had no significant change in size since taking octreotide. Most nodules are around 1 cm, give or take. How are you doing with the diagnosis?
Replies to "@myboys02 Sorry to hear about your diagnosis, but so glad you have a diagnosis because DIPNECH..."
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@californiazebra . thank you for getting back to me. I see that you have a lot of experience in the dip nech area since you have many which they say so do I, but they are all just in both lungs. They didn’t metastasize my pulmonologist had sent me for a PET scan after saying that my nodules were growing the last two years so I went for the PET scan. Ishowed that nothing metastasized and he said all the nodules look pretty much the same so he was putting it to rest that it wasn’t lung cancer and he felt that it was the dip nech so he sent me to a specialist to have a bronchoscopy and a biopsy and a biopsy show that one of my nodules that’s 2.1 cm came up malignant but the other two that they tested and the lymph node that they tested came up negative, but he did say I have several of them and felt that surgery is not an option as the main lung nodule is in the center of my lung and because I have many I will lose a lot of my lung so he feels that I should do these injections, which I am starting on Monday and he said will take it from there. I’m seeing throatic oncologist. He does specialize in neurodocrine tumors. I do think I’m going to go for a second opinion at Sloan Kettering because it’s a very good cancer hospital just to find out if they feel I’m doing the right thing. The injection I am starting is not the one your doing but very similar I was told. I’m 60 and had nodules for about 10 years but haven’t really grown until the last 2 years. I have had a chronic cough for years and also some wheezing but we always through it was like a asthma/copd . I am hoping there aren’t a lot of side effects and hoping this will work. My doctor hasn’t mention anything about ablations. Like I said, I am going to go for a second opinion, but I do wanna start these injections with this doctor because the second opinion may take a while to get an appointment so I figured I would get some kind of start.