Any advice for someone recently diagnosed with NETs?

Hi @pammy229
I’m glad you decided to go to Mayo and will undoubtedly be hooked up with a NETs team of doctors. That’s important.

Interesting about punching a hole and your lung lobe inflating. Surprised you didn’t have shortness of breath.

The fact that you’ve had the tumor since 2015 or before should reassure you that it’s slow growing. Good news! Since you weren’t short of breath with that lobe collapsed, that should be reassuring that you’ll likely be fine if they decide to remove that lobe along with the tumor which is common for those who have a single tumor.

I have over 50 NETs tumors across both lungs because I also have DIPNECH that causes that. Those who have a single tumor can probably offer their more relatable case histories similar to yours. I have too many to remove so I had the largest tumor 2.6 cm destroyed with microwave ablation and I’ve been receiving monthly octreotide injections for 4 years to control symptoms and slow growth even more. So far so good. My 50 were first seen but not diagnosed in 2005. Based on symptoms, I’ve had them at least 35 years so that should bring you some comfort.

Let me know if you have any specific questions. Good luck on the 2nd!

@pammy229

I appreciate the added information on your recent lung NET diagnosis. I'll invite some other members with lung NETs to join this discussion such as @californiazebra @ce1b and @gmapam

Will the PET scan be done at a Mayo facility?

No wheezing or shortness of breath, however I had coughed up blood maybe 4 times in the last 5 years. I finally asked for a CT. The first bronchoscopy was done in Idaho and the biopsy was benign. I decided to go to Mayo Clinic in Jacksonville; they did a second bronchoscopy and learned it was a NET, grade 1. They punched a hole through the middle of it, and the lower lobe of my lung (which had been collapsed without symptoms) inflated again. They took several biopsies and one piece was 1.2 cm. They did not check any lymph nodes at that time.

@pammy229 Hello Pamela and welcome to the NETs support group on Mayo Connect. This is a good forum to share your experiences and learn from others who share a similar diagnosis.

As you mentioned a lung NET, here are posts where members have discussed lung NETs.
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung+NET#discussion-listview
As this is a new diagnosis for you, please share as you are comfortable doing so, some of the symptoms you were experiencing that led to this diagnosis. For example, were you having shortness of breath or a chronic cough? Has the size of NET in your bronchial tube been determined?

I look forward to hearing from you again. Will you continue to post with your questions and concerns?