Replies to Good to know. Just frustrating that no one ever suggested the SOB on exertion was related…

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Neuroendocrine Tumors (NETs) | Last Active: Jul 20 1:51pm | Replies (11)

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@jhhaas

Good to know. Just frustrating that no one ever suggested the SOB on exertion was related to DIPNECH. I read it on line. My lobectomy was because the largest tumor was cancerous and there were other tumors in that lobe and throughout the lungs. Thankfully I don’t have coughing, but I do plan to see a NET specialist for another opinion just to be sure I shouldn’t be on a treatment med. I went to MSK and they didn’t refer me anywhere except to a local pulmonologist - just scans every 6 mos so far. I feel fortunate - but want to make sure I shouldn’t be more proactive

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Replies to "Good to know. Just frustrating that no one ever suggested the SOB on exertion was related..."

Teresa, Volunteer Mentor | @hopeful33250 | Jul 20 1:22pm

Seeing a NETs specialist is the best way to ensure that you are on the right track, @jhhaas. NET specialists are few and far between. If there is not one in your immediate area, even a virtual consultation would be a good plan.

Mayo Clinic has NET specialists at all three of their locations. If you are interested in seeking a second opinion at Mayo, here is a link with information on obtaining an appointment, http://mayocl.in/1mtmR63.

If, for any reason, you cannot be seen at a Mayo location, here is list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I look forward to hearing from you again. Will you post again with questions or updates?

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