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Hi Larenn,
May I ask how large your lung tumor and subcutaneous nodule were? I have a 2mm nodule in my left lung, elevated Chromogranin A (off PPI's for 6+ weeks thru repeated testing and elevated each time), elevated normetanephrine and metanephrine levels, but so far normal 5HIAA and "clear" CT w/dye scan from neck thru rectum (except for lung nodule mentioned and previously known thyroid nodules). I have enlarged lymph nodes on jaw line that mostly stay,but sometimes decrease in size only to increase again. I too have subcutaneous nodule over left rib cage (8-10mm wide?) and numerous ones on both sides of shins and above outside ankle bones. Ultrasound found some larger ones deeper in as well. But no one seems concerned about them or the lung nodule. Oncologist said yes labs are elevated but lung nodule not a NET because it's a "calcified granuloma" and no other NET tumors found so to come back in 1 yr for another scan or if carcinoid symptoms (I have all of them!) get worse. Meanwhile new neurologist is doing labs for paraneoplastic tumor/conditions as well as movement disorders. She said sometimes cancer shows up neurologically first. So I'm concerned all that is connected to the NET testing already done. I've been going downhill for 1.5 yrs, but especially in last 6 months as dyspnea and movement intolerance increasing to point I'm crawling up steps and can't do more than 1 thing before needing to sit & rest.
Replies to "Hi Larenn, May I ask how large your lung tumor and subcutaneous nodule were? I have..."
Hello @lisa812
I would like to join Colleen, @colleenyoung, in welcoming you to the NETs discussion on Mayo Clinic Connect. I am sorry to hear of the difficult symptoms you are experiencing. I can tell that the breathing problem, as well as the pain, are difficult to deal with.
You do not mention that type of doctor you are seeing, however, it would be helpful for you to have a consultation with a NET specialist. NET specialists are oncologists who have special training and expertise in the area of this rare form of cancer and best able to offer treatment modalities that are state-of-the-art. If you are not nearby a NET specialist, I would encourage you to at least seek a virtual appointment.
If you live near one of the Mayo Clinic campuses, Minnesota, Arizona or Florida, they all have NET specialists who may be able to help you. Here is a link to with directions on how to seek an appointment http://mayocl.in/1mtmR63.
If, for any reason, you are not able to get an appointment at Mayo, here is a list of NET specialists in other states and throughout the world,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Are you willing to seek a second opinion?
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@lisa812, it looks like you've had thorough testing and follow through for NETs, but that you are still concerned, especially since you have continued symptoms that are affecting your quality of life. I'm tagging @hopeful33250 to see what she might suggest.
I think she'll ask if you've been to an oncologist who specializes in neuroendocrine tumors. Many members here have shared the trials and tribulations of the long diagnosis process before getting their NETs confirmed. I also wonder if the symptoms you are experiencing might be related to something other than NETs. Have other conditions been ruled out?