NETs survivor

Hello @es2000ca and welcome to the NETs discussion on Mayo Connect.

Most of us who have had NETs had them found incidentally, much like you. Doctors were often looking for something else and found a NET incidentally. I have had three surgeries for NETs in the upper digestive tract. These surgeries have been over a 13 year period of time. So, having annual NET check-ups is important. (Even after the 10 year period.)

What type of NET tests did your doctor recommend?

Here is a website that you might find helpful. It will describe the type of tests you need on a regular basis and will also provide you with NET specialists throughout the world. I would begin by making an appointment with a NET specialist (even if you have to travel to see one) and then have that specialist make recommendations to a local oncologist if you cannot travel on a regular basis.

Here is a link to finding a NET specialist, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Here is a link about yearly tests for NETs, https://www.carcinoid.org/for-doctors/diagnosis-and-surveillance/

As NETs is considered a rare form of cancer, it is important to learn as much as you can. Often support groups can be helpful to learn from the experiences of others. Here is a link to support groups, https://www.carcinoid.org/resources/support-groups/directory/. I hope you can find one in your area.

Keep in touch. I am interested in how you are doing. Will you post again?

Well, last fall, following my surgery I did have gastroscopy biopsies with colonoscopy. Also Octreoscan in nuclear medecine. Plus blood work and pee test such as chromogranin A, 5 HIAA and cortisol suppression test. My surgeon said to have blood and pee tests done every year thru my family and if my results show something he will refer me again to my surgeon. As my results was all negative in the fall I was diagnosted full recovered. ☺

It sounds as if your doctor is following up with the necessary tests, @es2000ca, and that is a good thing. As you probably know, NETs is a very slow-growing cancer. My surgeries were in 2003, 2005 and not again until 2016. So keep a watch out and be sure to follow up, especially if you have any symptoms of carcinoid syndrome (diarrhea, flushing of the face, weight loss, etc.). If these symptoms appear don't hesitate to follow up right away.

Thank you for the reply. I sure could use the weight loss but if it leads to loss of life I ll just struggle with what I got

Thank you and take care. 😊

Forsure ☺