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Diagnosed with DIPNECH yesterday!
Neuroendocrine Tumors (NETs) | Last Active: 4 hours ago | Replies (5)Comment receiving replies
Were your tumors malignant which were destroyed with microwave ablation? The one I am scheduled to have removed was biopsied and found to be malignant. A few lymph nodes, along with this tumor, lit up on a recent PET scan. I did contact Huntsman Cancer Hospital today to schedule a second opinion. My insurance isn't accepted there, but I will pay for a few consultations and I will work to find an experienced NET team that is aware of DIPNECH, as you have mentioned. What is involved in ablations? I'm not sure how many tumors I have. I do know all lung lobes are involved. I believe I also have had this undiagnosed DIPNEC for 30 years. Treated for adult-onset Asthma for years without great results, and for the last 3.5 years, I've been incorrectly diagnosed with bronchiectasis. Thank you for your response. Best wishes.
Replies to "Were your tumors malignant which were destroyed with microwave ablation? The one I am scheduled to..."
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Yes, the tumor I had ablated was malignant (typical carcinoid). It was biopsied first. The microwave ablation procedure took a couple hours. I was given a local anesthetic for where the two probes were inserted thru my back and into my lung. They gave me what they called moderate sedation but it had no impact as that stuff doesn’t work on me. You have to be awake so you can hold your breath for all the CT scans so being face down on the CT table and not able to shift positions for a couple hours was the hard part for my body. They insert the probes (didn’t feel much) and then you have a quick CT to see where the probes are in relation to the tumor then they reposition the probes. We did this about 20 times then once the probes are in the ideal location the actual ablation (heat to fry the tumor) was about 20 min I think. I was told there are not many nerve endings in the center of the lung where my tumor was so it’s not painful. Nerve endings are along the periphery. The positioning hurting my neck was the issue but my neck, back and shoulders already had issues.
The rule of thumb for DIPNECH and lung NETs (from what I’ve read) is anything 5mm or greater is likely malignant.
I had a DOTATATE PET scan but it revealed I don’t have somatostatin receptors so it wasn’t helpful in my diagnosis.
DIPNECH is a benign neuroendocrine condition so if even one of your tumors is malignant then you also have lung NETs. DIPNECH is often a precursor to lung NETs but more people have lung NETs without DIPNECH. Good luck with your second opinion.