← Return to Neuroendocrine cells in Breast and Lungs DIPNECH

Discussion

Neuroendocrine cells in Breast and Lungs DIPNECH

Neuroendocrine Tumors (NETs) | Last Active: Sep 16 11:26pm | Replies (35)
Comment receiving replies
@grec

I have that too. I am not taking anything for this at this time. It is scary. I was told it was very slow growing. Mine is in my lungs.

Jump to this post

Replies to "I have that too. I am not taking anything for this at this time. It is..."
Teresa, Volunteer Mentor | @hopeful33250 | Jan 26 10:09am

Hello @grec and welcome to the NETs support group on Mayo Connect. It is a good idea for any type of NETs diagnosis to have at least one consultation with a NETs specialist. NETs specialists have specific training and experience in treating this rather rare form of cancer. This is really important.

If you are not able to have an in-person consultation, a virtual appointment is often available. Mayo Clinic has NET specialists at all three of their locations. Here is a link to get appointment information, http://mayocl.in/1mtmR63.

If for any reason you cannot be seen at a Mayo facility, here is listing of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatmhttps://connect.mayoclinic.org/interaction/comment/1003915/reactions/listview/ent/find-a-doctor/. How are you feeling now?

@grec, how long ago were you diagnosed with a NET in the lungs? Were you having symptoms at the time or was this an incidental diagnosis?

VIEW AND REPLY
Colleen Young, Connect Director | @colleenyoung | Feb 6 3:38pm

@grec, it is scary having a rare disorder, especially when active surveillance is the presecribed treatment.

Are you having any symptoms? How was the diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) discovered for you?

VIEW AND REPLY