Recently diagnosed with a NET in my middle lobe of my right lung.

Hi @gmapam

I have lung NETS and have had unrelated diverticulitis several times in the past 24 years so you certainly could have both. They could always clearly see my diverticulitis on a CT scan showing inflamed pockets rather than tumors. Hoping your NETS is confined to the lung. I hope you get your NETSPOT scan approval soon. I had one, but it turns out I don't have somatostatin receptors needed for the test to be beneficial so I won't have NETSPOT scans.

I have talked to a lady several times who had only one lung NETS tumor, 3", removed 10 years ago, no other treatment and has never had another issue. No residual respiratory issues even though one lobe of her lung was removed. I'm have high hope for you that you'll be one and done. I met her through LACNETS.org which is a really good resource for NETS patients. Lots of educational videos. Blessings, Zebra

While NETs is a complicated cancer it was an easy diagnosis. A CgA blood test followed up by a PET scan is how mine was discovered.

The PET showed a couple of different tumors which were then biopsied for conformation.

As my tumors were non-resectable I am now living my best life on month to month Lanreotide injections.

I like to remind myself that NETs is a marathon not a sprint.

Be blessed
CEB

What is a NET Scan compared to a PET scan?

Hello @gmapam and welcome to the NETs support group on Mayo Connect. As @californiazebra said, it is possible to have both NETs and diverticulitis. I have had three surgeries for NETs in the upper digestive tract but also have bouts of diverticulitis. I know how easy it is, however, to begin to attribute any symptom or health issue to cancer. Once you have a cancer diagnosis it tends to be your first thought.

If you care to share more, was your lung NET discovered because you were having symptoms?

Hi Teresa
The NET was an incidental finding when I was in the hospital in January for diverticulitis. Evidently it is was noticed in 2018, but no one followed through. I am in the process of asking my pcp to request that to see a NET specialist at UCLA. I live in a small county in central California. I can’t even schedule a NET spot scan locally.

Hi @gmapam

My lung NETS team happens to be at UCLA. I also had my NETSPOT scan there and have all my followup CT scans at a UCLA facility instead of locally per their request. I love my interventional radiologist there. He’s the one who destroyed my largest lung tumor using microwave ablation. I meet with him virtually after every scan. I also have a thoracic oncologist there who is part of a multidisciplinary NETS board. I meet with him virtually as well. I’ll be happy to give you more details thru private messaging or we can talk on the phone if you want (send a private message with any contact info). Let me know. 🙂

Hi @peg152

The simplest answer is the NETSPOT scan is basically a PET scan that uses a different type of contrast specifically designed to detect neuroendocrine tumors NETS and somatostatin receptors needed for some types of NETS treatment. The NETSPOT scan feels like the same experience as a regular PET scan to the patient.

@gmapam

Many of us with NETs had incidental findings. Often the presence of NETs are without symptoms. You are wise to seek out a NET specialist. It looks like @californiazebra has found good medical care at UCLA. I encourage you to keep advocating for the best care possible.

How is your diverticulitis being managed?

Hi
Only by me🫤. I’ve been on a plant based diet since January. I’ve lost 20 pounds since January and can’t seem to gain it back. Slowly starting to introduce chicken and turkey. I’m going to see a nutritionist this coming week😊

They took out a portion of my colon and that was it.