I am 75 and have carcinoid tumors NET in lungs

@tomrennie Hi lanreotide. Every 4 weeks .

@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?

@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.

@myboys02
So glad to hear you are going for a second opinion at Sloan Kettering. Smart move to be sure you have the right treatment plan for handling this. Glad you're starting the injections now. You're hearing some different things from what I was told and I'm being treated by the UCLA NETs team. I was told octreotide would slow growth and typical carcinoids are already slow growing so great. They did not think octreotide would shrink any nodules, just stabilize. There was no suggestion that it would make the cancer inactive. The ablation destroyed my largest carcinoid and made that one inactive.

I was also diagnosed with asthma my whole life. The chronic cough was also blamed on chemical sensitivity/allergies which I also have, but much less on the octreotide. The cough is gone so I hope lanreotide is the magic for you that octreotide has been for me. I have some side effects, but pros outweigh the cons by far. That chronic cough was life ruining and likely caused damage to my lungs. The octreotide even made me able to pet animals for the first time in my adult life without an allergic reaction.

How large were the other two nodules they biopsied? I'm less concerned with the carcinoid issue than the sheer volume of nodules taking up my lung space and causing various lung issues such as obstruction, air trapping, wall thickening, etc. Please keep us posted on how the lanreotide works for you and about any second opinion.

@nannybb I had so much pain and spent 6 days I. Hospital surgeon said that was not normal kept appologizing not sure why but 5 months I get some sharp pains and my areas are still numb

@myboys02, Welcome to Mayo Connect. I see that @tomrennie and @californiazebra have posted with you. Please continue to post with any questions or concerns.

I’m 65 and was diagnosed with DIPNECH last summer after a tumor was found on my lower left lobe. It was a typical carcinoid and I had a wedge resection to remove it last September. I’ve had CT scans every 3 months and have lots of small NETS that they’re watching. I have no symptoms! They found the tumor on an abdominal CT scan over 12 years ago. At the time my Dr said it was nothing to worry about and was likely from an old infection. I have had several bouts of diverticulitis so the always do a CT scan to diagnose and the lung tumor was visible and growing. It wasn’t until
I was in the ER last June (for diverticulitis) when the radiologist said that tumor does not look good and insisted I get it checked out. My Drs at Mayo were able to review over 10 years of imaging showing the slow growth. Right now we’re just watching and waiting.