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So, now just still waiting, losing my mind being worried and new quest

Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (20)
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@lanierj1

I dont have rashes really, its just constant itchy skin and face flush and heat, idk

If your husband has one, why are they not removing it, or them?

They would rather wait till it opens up and creates syptoms?

Also if he has other symptoms, how do they know theres not one somewhere else?

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Replies to "@lanierj1 I dont have rashes really, its just constant itchy skin and face flush and heat,..."
lanierj1 | @lanierj1 | Sep 26 2:31pm

@jsudjian I hope you find answers quickly for your symptoms. The itching and loss of sleep are torture.
We have gotten 2 opinions, and both Surgeons/Oncologists say leave it alone until it is 2cm or if it becomes "active", since the Whipple surgery is high-risk and life-changing.
At 2 cm, it has a higher chance of spreading.
He has an MRI or CT scan every 6 months and a PET scan yearly.
Over 2 years, it has grown from 1.1 to 1.6 cm. We are thankful for the slow growth, but he does suffer from intermittent stomach/back pain, fatigue, and bloating that they say are not related.

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