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Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@littlecrown1966

Hello everyone!! I am new to the group!! Have been on my cancer journey since April of 2016 when i experienced my first symptoms, and doctors were perplexed, was misdiagnosed for a year. The first nodules were found in my thyroid, and in lymph nodes next to mu jugular vein....thus my first surgery, removal of the lymph node, and thyroid. I have metastasis to other areas of my body....primarily right now in lungs, bronchi...in the lining around my heart, and iliac chain of lymph nodes in pelvis, and possibly liver....i have undergone two additional neck disections...the last a more radical neck disection with removal of 40 lymph nodes from the left side of my neck....multiple of which tested positive for metastasis and evidence of extra-nodal metastasis....while my recovery from last surgery has gone well, scar looks good, i am struggling to regain nerve and muscle function of left arm, shoulder, neck, and face....still have limited mobility, and of course the daily battle with lymp fluid pocketing in chest wall, and shoulder, and back. Self care can be pretty daunting...some days are better and worse than others. I have been recieving care at Sanford in Sioux Falls, SD....but now am to the point where i have been referred to Mayo to explore other options....my case is currently being reviewed. I have done much research, and have learned so much along the way....this is my first time plugging in to a support group, i hope to learn so much more, and look forward to lending support to others as they also are making their way on their own healing journey...love and peace to you all!!

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Replies to "Hello everyone!! I am new to the group!! Have been on my cancer journey since April..."

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?

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,