Anyone with carcinoid tumors in lung and stomach?

Hello @emilyfaith and welcome to the NETs support group on Mayo Connect. I can understand your questions and the need to learn as much as you can from the experience of others. When I first posted on Mayo Connect, I was facing my third surgery for NETs in the upper digestive tract. My journey began in 2003 with my first surgery, with my last surgery in 2016, and I'm still here and doing well. The support you will find here on Connect is invaluable. These folks know a lot about NETs from personal experience.

As this is a new diagnosis for you, I would highly recommend having at least one consultation (either a virtual or in-person consultation) with a NET specialist. These specialists are different from general oncologists and have a good understanding of the best treatment options. This will give you the best start to your treatment plan. The continuation of your treatment plan can often be handled then by your local oncologist under the NET specialist's direction.

Mayo Clinic has NET specialists at all of their three locations. Here is information on how to obtain an appointment, http://mayocl.in/http://mayocl.in/1mtmR63. If an appointment at Mayo is not possible for any reason, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. It looks like there are several NET specialists in the Boston area.

Many of us who have been diagnosed with NETs had no symptoms, but the NET was found incidentally during an exam or test for something else. As you are new to this forum, I was wondering if you had symptoms that led to this diagnosis?

Thank you gif all that advice. Mine were found by accident. I had went to my dr with back pain and a pain at the top of my hip and she was very concerned about the hip pain. I coughed in the surgery & she questioned me about the cough. Long story short, the symptoms were nothing serious, the cough is either asthma or an allergy and they happened to find the tumour when they X-rayed me. Strange set of coincidences lead to its discovery. I’d no symptoms or illness from the tumour, which means it would have been terminal before it was discovered, if I hadn’t had that cough.