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New DIPNECH diagnosis, need advice on doctors
Neuroendocrine Tumors (NETs) | Last Active: 20 hours ago | Replies (36)Comment receiving replies
Welcome, @dipnech67, you are wise to seek a specialist. I'm sure you have seen the recommendation made by members in this discussion. You may also be interested in this journal article:
- DIPNECH: The Mayo experience. https://ascopubs.org/doi/10.1200/JCO.2019.37.15_suppl.e20029
If you would like to request a second opinion with a Mayo Clinic specialist, you can submit a request here: http://mayocl.in/1mtmR63
Replies to "Welcome, @dipnech67, you are wise to seek a specialist. I'm sure you have seen the recommendation..."
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@colleenyoung
Hi Colleen, I'm so glad you posted this article. Believe it or not, it was that very article that made me self-diagnose DIPNECH and present it to my breast oncologist who said, "I think you may be onto something." Once I was referred to a NETs team, they confirmed DIPNECH.
My 50+ lung nodules were misdiagnosed by at least 20 different specialists for a dozen years after they were discovered. Such a wide range of guesses from something benign and strange to metastatic cancer of some sort. When my breast cancer returned, I finally agreed to a lung biopsy to see if the lung tumors were related to the breast cancer and was diagnosed with lung NETs, I couldn't figure out why most people with lung NETs seemed to have a single tumor. Why did I have so many? Why was my case so baffling for so long an no one had even guessed it was lung NETs prior to the biopsy? So I started researching everything NETs and that's when I stumbled upon the Mayo article about the retro DIPNECH study. Voila! Thank you, Mayo!