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DiscussionWelcome to the NETs Group! Come say hi.
Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (411)Comment receiving replies
Replies to "Hello everyone!! I am new to the group!! Have been on my cancer journey since April..."
Hello @littlecrown1966
I would like to join @colleenyoung is welcoming you to the NETs discussion on Mayo Connect. As you may already know, many NETs patients were misdiagnosed before ever receiving their NETs diagnosis. NETs is rare and as such, is not always considered. It is good that you finally were diagnosed.
I am so pleased that you are learning as much as you can about NETs and seeking support. This attitude will be invaluable as it will enable you to advocate for yourself.
As you may be consulting with Mayo Clinic in the near future, I thought you might find this video about NETs interesting. The presenter is a Mayo Clinic physician who specializes in NETs. He gives a very good overview,
Welcome @littlecrown1966. You're not alone in having a long road to diagnosis with misdiagnosis along the way. NETs is a sly one. @andre1221 @gapsc @nathanb1979 @titansmistress @ahtaylor have been there too.
To help you connect with others who have experience with PRRT, see these related discussions where fellow NETs members are talking about treatment with peptide receptor radionuclide therapy (PRRT) with lutetium Lu 177 dotatate (Lutathera):
- Interested in hearing people's experiences with PRRT https://connect.mayoclinic.org/discussion/prrt-treatment/
- PRRT for NETs: Questioning whether I should continue or not https://connect.mayoclinic.org/discussion/prrt-for-nets/
When do you head to Mayo Clinic? Do you know if you are a candidate for PRRT?