1. < Neuroendocrine Tumors (NETs)

Cough ! What could it be?!

Posted by queensmom @queensmom, Feb 21, 2023

I had Nets in small bowel. Got my surgery on November last year. Since then, am coughing a lot. I did the scan thought it could be cancer recurrence but nothing showed on the scan. Why am coughing a lot? Do i need another scan? Am coughing day and night non stop, just dry cough no blood or phlegm. Advice please

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meleelee1 | @meleelee1 | Feb 26, 2023
In reply to @smt "I did the watch and wait for a small (1cm) PNET on the head of my..." + (show)
@smt

I did the watch and wait for a small (1cm) PNET on the head of my pancreas that was diagnosed in 2012 after years of symptoms. In 2019 I had a modified Whipple surgery, liver resection and liver ablation. My primary NET didn't grow any larger over the 7 years. Ask a lot of questions, get a second opinion from a NET specialist, so that you feel comfortable with your decision. My quality of life improved after my surgery because mine was functioning so in the end I wish I had surgery alot earlier. In 2012 I should have done more research/reading on my own and should have asked a lot more questions. Wishing you well on your journey.

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Thank you for your honesty. I have plans for a second opinion. My NET is also active. I'm getting real tired of
Dr.s that don't know symptoms telling me "it's to small to be causing symptoms, let's do another scan and more blood test." I need a Dr that I can really talk to.

REPLY
meleelee1 | @meleelee1 | Feb 26, 2023
In reply to @colleenyoung "@meleelee1, it sounds like you might consider getting a second opinion with a NETs specialist. Sometimes..." + (show)
@colleenyoung

@meleelee1, it sounds like you might consider getting a second opinion with a NETs specialist. Sometimes very small, low grade, pancreatic neuroendocrine tumors, waiting may be an option. Dr. Halfdanarson explains in the video in this article:
- Pancreatic neuroendocrine tumors care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/pancreatic-neuroendocrine-tumors/care-at-mayo-clinic/mac-20352492

Do you have symptoms? Have you thought of getting a second opinion?

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I am having symptoms, nausea, dizziness, rapid heart rate. I am not losing weight, wish I could lose a little. But I am bloated and I can't eat very much at a time. Feeling of starvation and nausea, it's crazy!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 13, 2023
In reply to @meleelee1 "I am having symptoms, nausea, dizziness, rapid heart rate. I am not losing weight, wish I..." + (show)
@meleelee1

I am having symptoms, nausea, dizziness, rapid heart rate. I am not losing weight, wish I could lose a little. But I am bloated and I can't eat very much at a time. Feeling of starvation and nausea, it's crazy!

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Hello @meleelee1,

It has been a few weeks since you last posted, and I was wondering how you are feeling now? Any relief from the pain? Have you been able to secure an appointment for a second opinion from a NET specialist yet?

Will you post an update when it is convenient for you?

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