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I am 75 and have carcinoid tumors NET in lungs
Neuroendocrine Tumors (NETs) | Last Active: 4 hours ago | Replies (67)Comment receiving replies
Hi . I have had long nodules for about 8yrs that started growing. Afrrr cat scan, pet scan and biopsy i was told have neurodocrine tumors dipnech after having bronchoscopy I was told one of my tumors is malignant . Because it is in the center of my lung surgery is really not an option. My doctor is putting me on injections and was told I will need to do them every 4 weeks for the long term. I’m worried about the malignancy tumor but he told me that the injection should shrink tumor and kinda make cancer like in active. There all in both lungs and no where else but I do have a lot. Have you ever had injections for your carcinoid tumor??
Replies to "Hi . I have had long nodules for about 8yrs that started growing. Afrrr cat scan,..."
@myboys02 Hi and welcome to Mayo Connect. What medicine is in the injections that you will be getting?
@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?
@myboys02, Welcome to Mayo Connect. I see that @tomrennie and @californiazebra have posted with you. Please continue to post with any questions or concerns.
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@myboys02
My tumors were inoperable too. I had SBRT (radiation) on 2 of them 3 years ago at 68. Then sandostatin shots monthly. Nothing has grown. Good luck!