Welcome to the NETs Group! Come say hi.

It should be true for any diagnostics, but always check with your doctor and the radiology department.

Hi @breck
You’ve been through a lot. Sorry to hear they did not get it all. I also have lung NETs (typical carcinoids) and DIPNECH which is very rare but sometimes a precursor to lung NETs. People with DIPNECH typically have multiple slow growing tumors. I have over 50. When you say you have multiple tumors, I wonder if they have considered DIPNECH in your case? There are only 300 documented cases so most doctors have not even heard of it. It took 12 years for me to get an accurate diagnosis.

When you say you have very big new nodules, I’m wondering how big and why they want to wait for them to get bigger. Is that so they can do a needle biopsy?

Also, do you have any respiratory symptoms such as coughing, mucous, shortness of breath? If so, for how long? Did removing part of your lung cause any respiratory issues?

Yes, they want to do a needle biopsy. They say there slow growing so they want to watch them. I am on oxygen and overweight. Idk if that has anything to do with it. They said that there would be treatment options but less in my case because of my lungs and breathing. But they did set me up for an appointment did you breathing test. To be honest I'm not sure myself. And of course after I leave I have so many questions. The Dr did say he thought it was slow growing. But this was my first time at Mayo. I live in Iowa so my initial surgery I had here where they removed half my lung . But I didn't receive good care and so I want to mayo to get a second opinion and just see if they would take over my care. I'm honestly just so new to this I don't know a lot about it and I don't understand a lot about it it's very scary. I am so sorry you're going through it that's a lot too.

I have continually gotten my lanreotide and have MRIs with contrast on a regular basis for 3 1/2 years. The lanreotide only helps control symptoms for the functioning gastrinomas I have on my liver and pancreas it never worked in my case to control tumor growth I had other treatments for that.

Interesting I never had any symptoms until I was put on Lanreotide for growth and like you it didn’t work I have find other treatments for that
Thank you
And good luck to you

Hi, I'm Wendy from north Idaho! Saw Dr's at Mayo Rochester after being diagnosed w acarotid body paraganglioma on Mt right carotid artery. They determined was small and likely benign, so currently watching. Had too many symptoms for small benign NET though, they said. So did full body CT scan and found 2 malignant tumors on left kidney. Successfully removed both tumors w good margins and saved my kidney! Returning for followup check in Jan. Will take the NET off the back burner in March/ April & develop a Plan. BTW... I am now off of ALL BP meds for hypertension. So grateful to Mayo drs! Anyway, that's my little story in a nutshell; welcome to all of you on this journey. Mayo Connect has been a wonderful and informative support for me. I'm known as 'gangcarotid1' on Connect.

Hello Everyone! Looking forward to learning WITH you !! I was just Diagnosed with Merkel Cell CA at 79 yrs. old.Initial surgery 3 wks. ago took out orange size tumor in lower right leg. Just had first Immunotherapy Rx...Going to have another Immunotherapy next week and then more surgery Dec. 3 followed by LOTS of radiation. Has anyone all ready had Merkel Cell CA? How are you doing after initial Treatments?
Kathy

Hi @breck
Thank you for your response. Sorry this is so scary and you have breathing issues. Also sorry to hear your original care team did some damage.

My tumors are very very slow growing. They were first found on a CT scan 16 years ago and based on symptoms have likely been there at least 30 years. I take octreotide injections that have really helped the chronic coughing and shortness of breath. My case is being managed well by a NETs team at a university hospital near me. I’m glad you’re at Mayo now with a team familiar with lung NETs. My team tells me we’ll be partners for a very long time. An experienced NETs team makes a difference. Prayers for you. ❤️

Hi, I’m Alina from Sherman Oaks in the San Fernando Valley near LA. After two years of diarrhea with no flushing, I was diagnosed last December With a poorly differentiated neuroendocrine cancer. So I am not a candidate for lantreotide. My CEA was over 3000 at diagnosis and it came all the way down to three, after four months of oxaliplatin and 5-fluorouracil. With two negative pet scans that was followed by Xeloda, which was a disaster, because I had terrible nausea with it. A pet scan after I stopped the Xeloda I showed that Things were lighting up again. My CEA went to 30. I am now on irinotecan and 5-fluorouracil. Although I was quite happy with my oncologist, I decided to go to Mayo/Rochester for a second opinion. They said I was getting “outstanding“ Care. I have a 3 cm glowing mass in the liver , and the plan is to go to the UCLA interventional radiology team to have it ablated. I’ll be doing that next Thursday and Friday. They say there may be pain afterwards and suggested I take a week off (I went back to work two days a week beginning in June - I’m an internist.). Have any of you been diagnosed with poorly differentiated neuroendocrine tumor? Is anybody else getting IV chemo?

Very interested in your second opinion that indicated you did not need the Octreotide injections. I have non-functioning neuroendocrine metastatic tumors in my liver. As non-functioning I have no symptoms. i do have a grade 2 and KI-67 0f 6-8% which I am told indicates a faster growing tumor. Mine is well differentiated which would indicate slow growing. I have had two opinions one to start Octreotide and one to watch and wait. For the doctor who said to start he was influenced by the KI-677 and grade. Trying to make an informed decision and interested in what you learned. Thanks for sharing.