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Mast Cell Disease vs Carcinoid

Blood Cancers & Disorders | Last Active: Oct 24, 2020 | Replies (4)

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@JustinMcClanahan

Hello @megansims. I see that you have also found some of the NET discussions, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/. Here is another discussion that you may find interesting in Blood Cancers & Disorders titled, "Mast Cell Activation," https://connect.mayoclinic.org/discussion/mast-cell-activation/. The discussion has many posts, but you may find some of the posts in that discussion relevant and similar to your own.

@megansims, has your provider mentioned anything about mast cell disorder, or are you just wondering from other members if there is any validity to your own concerns? Have you discussed this potential diagnosis with your provider or asked for a second opinion?

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Replies to "Hello @megansims. I see that you have also found some of the NET discussions, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/. Here..."

Thanks @JustinMcClanahan . I spoke with A NET specialist on the phone and he was wondering if I had had the testing to rule it out. Right now, the biomarkers are more pointing at a NET, but because nothing is showing up on scans, he wanted to make sure that it had been ruled out! I am in the process of getting an appointment at Mayo, right now, my Endocrinologist at the U of MN is not doing much of anything!