Met with thoracic surgeon today.Two typical carcinoids in right lower lobe.He says he will have to remove the lower lobe because of where they are.Anyone have similar surgery?I welcome all experiences or advice.
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Wow, glad they found them. I, also, had a few other tumors in the lobe they removed - only one was malignant, but they both showed up as primary “typical” carcinoid tumors, and my other lung has numerous lumps and tumorlettes. So sorry about the colon cancer, what is the status of that? have the doctor said if it’s related? My son was diagnosed with colon cancer at age 45 And aside from surgery never needed any treatment. It has been five years and he is still cancer free, thankfully. But it certainly makes me wonder of the genetics of carcinoids.
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The doctor said the typical carcinoids have nothing to do with my colon cancer.
I had most of my right colon removed on March 30
It had spread to two lymph nodes. So I had a round of chemo.
I waited until now to have my lung surgery.
The surgeon told me that they do not spread. They simply grow in place.
That’s great news about your son.
Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at least as part of your care team. One at a centers of excellence will work with your local team. Look into octreotide injections to slow the growth of additional tumors and reduce any symptoms caused by DIPNECH. Prayers for you.
Thank you, Colleen. I will definitely look into establishing a team moving forward. So far my symptoms are not very problematic, thankfully but I want to stay on top of this, for sure.
I had two typical carcinoids removed on Nov. 21
I had my entire right lower lobe removed because of where they were.
Saw surgeon today for 2 week follow up. All is well.
I was diagnosed with colon cancer in January. These carcinoids were found when having CT for colon.
The pulmonary doc did a broncoscopy for tissue sample. Both were malignant.
I will have 6 month follow up with scans.
Surgery was tough, but I am so glad I did it!
I am 72 years old.
Surgery to remove the malignant carcinoid (and right middle lobe) was on Oct 2. Surgeon wants a scan every 6 mos, and referred me to a local pulmonologist (because I didn’t really have one yet. The malignant nodule was found incidentally by a cardiologist.). That pulmonologist is not familiar with DIPNECH but agreed I should be seen and scanned every six months. It seems like a good plan at least for the first scan. But after that, I am thinking I should maybe have a consult with a specialist.
Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH and lung nodules.
You ask a good question about whether there is anything more you can do to prevent or treat the multiple nodules that are not cancerous. My understanding is that DIPNECH requires early identification and close surveillance to prevent progression to carcinoid tumours. So regular monitoring is key. How often do you have follow-up appointments?
Hi - I’m new here. But I saw your question. I was diagnosed this summer with a malignant lung nodule, found incidentally. Had right middle lobe removed at Sloan Kettering, eight weeks ago done robotically and recovering well. Testing revealed the malignant tumor was typical carcinoid, and that I have DIPNECH. I will get scanned every six months at Sloan Kettering, but my surgeon says there is no other treatment needed right now, and referred me to a local pulmonologist. The lobe that was removed revealed other nodules that were not yet malignant. And scans show there are lumps and nodule on my left lung. I’m just trying to find out if there’s something else I need to be doing in terms of prevention or treatment. The local pulmonologist was not familiar with DIP NECH. If you opt for surgery, I can’t emphasize enough how important it is to go to the very best doctor and team that you can find. I was so happy with my treatment at Memorial Sloane Kettering. FYI, I’m a 74-year-old, active female.
@meryls12, you may wish to consult with the leading NETs team at Mayo Clinic in Jacksonville who have experience treating diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH).
Here is the link to get started, if you wish to inquire about a second opinion http://mayocl.in/1mtmR63
Thank you so much for this information, I really appreciate it. Hope your doing well.
If anyone out there can recommend a Dr. in the Florida area that is very familiar with treating Dipnech. I am under a pulmonologist care now for many years and now i would like to see a specialist in this field.
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