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Sep 9, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

Hi Theresa,
I am on a low fiber diet with Metamucil 2x/day. I'm still staying away from hard to digest foods, salads, nuts, whole wheat, tomato sauces, greasy foods, etc. I'm down 22 lbs. I don't see my oncologist until Sep 23, so will see what he recommends. I have absolutely NO clue what he will suggest, possibly a follow-up CT in a few months?
I'm tired and weak. Don't feel like doing the usual things. I really want to but my body just doesn't respond the same. I'm hoping this is a normal response, but it is getting old! I've always kept busy with lots of energy so this is really foreign to me!
Emmie

Sep 8, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

Hi Theresa,
Thank you for reaching out. Wow. So much has happened. Dr. Stuckey did my surgery Aug 12, removing 12" of small intestine, which contained 13 grain of sand-sized NETs. Two of 22 lymph nodes were positive for mets. I had no pain at all after the surgery! No sepsis, no c-diff. Went home Aug 17. Doing okay at first, then loss of appetite and fatigue.
On Aug 28 I had doubled over severe lower abd pain and went to a Tucson ER. They air-lifted me to Mayo Phoenix, admitted for severe colitis and two abscesses. Placed on bowel rest with infused nutrients for 5 days. Two drains, on of which was removed before I came home Sept 4. I return to May this Tues for another CT, removal of drain. labs and visit with Dr. Stuckey.
It has been a very long haul! Some days are better than others & I find myself getting somewhat impatient to feel better. Everyone says my body has been through a LOT, so I believe them.
Thanks again!

Emmie14

Jun 28, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

My appt is July 11 with Dr. Stucky. I saw my general surgeon this morning and she said if I had the surgery, Dr.Stucky may feel the small intestines for a possible nodule. What happens next is a mystery. …

Jun 28, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

Yesterday I saw an oncologist here in Tucson. His thought was that the primary tumor is in the small intestines but it did not show up in the PET. This matches the path report as "…consistent with primary small intestinal carcinoid tumor." He said "I can just leave it (the 3cm mesentery mass) there since it is very slow growing." I have an appointment with Dr. Chee Chee Stucky on Jul 1. Eager to see what she says….

Jun 21, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

My general surgeon, who got the PET approved, said it "has to come out." I am being referred to an oncologist and surgeon through the U of AZ. My problem is that I am very prone to C-diff and seem to have all of these odd side effects after procedures. I am more afraid of the surgery than the cancer. I will know more after the 27th June and keep you informed.

Jun 20, 2019 · Anyone treated for NETs at Mayo Clinic in Jacksonville, FL in Neuroendocrine Tumors (NETs)

I was officially diagnosed one week ago with a core needle biopsy. I had a colon resection for a large polyp in Oct 2018. Post surgery I had sepsis and pneumonia. During my recovery from that, I had lower right abdominal pain and had a CT. Nothing showed up in the LR abd, but there was a 3cm mass in the midline mesentery. My surgeon ordered a PET but it was denied by insurance. Meanwhile I had symptoms of IBS. Five months later, and after four attempts to get the PET, my surgeon called the medical director at the insurance company and the PET was approved. The mass lit up, leading to the core biopsy. No I wait to see the oncologist next week…