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

I had been diagnosed in another hospital and had half had half my lung removed. Thought it was gone but came to Mayo for second opinion and found out it's not they're watching it for 3 months and then I go back and he wants to hold off right now on treatment till it gets bigger. Some of the new nodules are very big and I was positive at the margin where they took out my last tumor which was by my heart I guess in my lung

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Replies to "I had been diagnosed in another hospital and had half had half my lung removed. Thought..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 7 1:01pm

You have had quite the introduction to NETs. I'm glad that you are being seen at Mayo. They should provide you with good guidance. The NET specialists at Mayo are extraordinary. This evening, the NETs support group will be meeting via Zoom at 5:30 EST. If you can attend, I think you would enjoy the speaker. After the speaker, the individual members share. There is a lot of support and good information offered in these meetings. If you would like to attend this month's meeting tonight, here is a link with information to register.
https://connect.mayoclinic.org/comment/1165938/
This support group meets on the first Thursday of each month. I hope you can join us!

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 7 1:40pm

@breck,
Here is a discussion group on Connect that you might find helpful. Here you will meet others with Lung NETs, including @californiazebra and @emilyfaith
https://connect.mayoclinic.org/discussion/describe-your-recovery-from-lung-net-surgery/

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Zebra | @californiazebra | Nov 7 9:48pm

Hi @breck
You’ve been through a lot. Sorry to hear they did not get it all. I also have lung NETs (typical carcinoids) and DIPNECH which is very rare but sometimes a precursor to lung NETs. People with DIPNECH typically have multiple slow growing tumors. I have over 50. When you say you have multiple tumors, I wonder if they have considered DIPNECH in your case? There are only 300 documented cases so most doctors have not even heard of it. It took 12 years for me to get an accurate diagnosis.

When you say you have very big new nodules, I’m wondering how big and why they want to wait for them to get bigger. Is that so they can do a needle biopsy?

Also, do you have any respiratory symptoms such as coughing, mucous, shortness of breath? If so, for how long? Did removing part of your lung cause any respiratory issues?

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