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DiscussionPrognosis for Metastasized NET
Neuroendocrine Tumors (NETs) | Last Active: Mar 20 11:16am | Replies (63)Comment receiving replies
Replies to "I understand that metastasis means it's spread. What bothers me is his initial oncologist told him..."
Hello @sandy23
I'm just now catching up on your posts that started on October 7. I can certainly hear the concern in your posts, especially not wanting to be "blindsided" by the unknowns of cancer. That is so common for those of us who deal with any type of cancer and especially NETs.
I've had three surgeries for NETs in the upper digestive tract (in 2003, 2005 and then again in 2016). Despite the three surgeries there is no current evidence of metastasis even though I do have pancreatic cysts and have in the past had lesions on the liver which all have remained unchanged.
As @colleenyoung, mentioned Palliative Care might be very helpful for your husband now. They would be able to offer him more help with his symptoms. As Colleen mentioned, Palliative Care is not hospice care. It does not necessarily reflect end-of-life care. Here is some information from Mayo Clinic's website regarding this type of care:
--Palliative Care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
I agree with your desire to find a NETs specialist. Mayo Clinic has some great NETs specialists so you might look there for a second opinion as @colleenyoung suggested. I would also encourage you to look at the Carcinoid Cancer Foundation (CCF) website. They also provide a lot of helpful information including NET specialists throughout the world. Here is the link to the CCF website
--Carcinoid Cancer Foundation
https://www.carcinoid.org/for-patients/
I'm looking forward to hearing from you after your meeting with your husband's doctor. Will you post an update?