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Anyone living long-term with DIPNECH on lungs?

Neuroendocrine Tumors (NETs) | Last Active: 3 days ago | Replies (29)
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@donnapeck51

Is this type of cancer considered Merkel cell carcinoma as well? I was reading about Merkel cell carcinoma and I click the link and it brought me here to you.

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Replies to "Is this type of cancer considered Merkel cell carcinoma as well? I was reading about Merkel..."
Zebra | @californiazebra | 3 days ago

Hi @donnapeck51
I’m sorry to hear about your Merkel cell carcinoma. I’m not a doctor but from what I’ve read Merkel cell carcinoma is a rare neuroendocrine skin cancer. Is that your understanding? So now they are saying the Merkel cell is in your lungs? Have they done a biopsy to see if that’s Merkel cell in your lungs or possibly something else? Are you seeing a NETs team? You need Merkel cell/NETs specialists who can answer your questions.

As for DIPNECH, it is even rarer and originates and stays in the lungs. It presents as multiple slow growing nodules and respiratory symptoms. It’s pre-cancer but can progress to lung carcinoids/NETs that is cancerous. I do not believe DIPNECH is Merkel cell but they are both neuroendocrine disorders. I hope that helps.

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