Questions on Recurrence & Likelihood of Multiple NETs

Posted by jatx25 @jatx25, Sep 23, 2022

Hello All,

I'm new to the NET world and feeling very lost (uninformed). Mine was found in my appendix in the pathology report by chance after an appendectomy this past June. Since then, I've had blood tests, a urinalysis, and a colonoscopy that all came back clear. However, the CT Scans show a "nonspecific 11x12mm vascular focus" in my
liver and the radiologist said "statistically this would be a flash filling hemangioma, FNH, or perfusion variation". I have an appointment with an oncologist to review everything next week, and while I hope this is a coincidental benign lesion they found in the liver, I don't want to brush it off considering how "rare" NETs are. Any advice on how I should navigate this appointment?

Also, I was led to believe these are so rare and highly unlikely to come back since the one I had was small and contained in the appendix. Has that been the experience of this group? Or did yours come back? If so, how soon?

Thank you - I'm so grateful to have found this group!
-Jennifer

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Sep 23, 2022

Hello @jatx25 and welcome to Connect and the "NET world" as you so aptly describe it. I can understand your feeling "lost and uninformed." My first NET was found in 2003, and there was little information and/or support back in those days.

First, these are rare cancers and generally slow growing. I have had three small lesions removed from the duodenal bulb over a number of years (2003, 2005 and 2016) and each time the surgeon said there would probably be no recurrence but, as you can see, that was not my experience.

Saying that, I'm glad to hear that your NET in the appendix was small and contained. That is always good news. I'm glad you will be consulting with an oncologist. It would be to your benefit to also consult with a NET specialist. The Carcinoid Cancer Foundation's website has a listing of NET specialists around the world. If there is not one near you, perhaps a video consult would be helpful to you.

I can't answer your question about the liver problem that showed in your scan. Was your scan a Gallium 68 Pet Scan? These are the very best for detecting NETs that other scans will often miss. If you haven't had a Gallium 68, it would be good to ask for one.

--Please see the Connect discussions on this type of PET scan. Here are the links,
https://connect.mayoclinic.org/discussion/gallium-68/
https://connect.mayoclinic.org/discussion/what-nets-show-on-gallium-scan/

After you have had a NET, follow up is very important. If your doctor does not suggest a follow up schedule, please ask for one. As you can see from my NET history follow up is very important. If you find these cancers when they are small and have them surgically removed, the possibility of metastasis is certainly lowered.

I would also like to invite you to Mayo Clinic's NET support group that meets on the first Thursday of each month at 5:30 EST. We meet virtually, via Zoom, and I will send you the invitation as soon as it becomes available. This is a great way to connect with others traveling this same journey. I'm sure you will find the meetings helpful.

What other questions do you have?

gneiss50 | @gneiss50 | Sep 27, 2022

I hope you get a good report on your liver spot. I had a similar spot on my liver 12 years ago, when I had a small bowel resection to remove carcinoid tumors. The doctors said it was not "hot" at the time, and watched it for change, which it never did. No explanation of just what it was, but it disappeared in the past five years. I understand your worry, because I woke up every day wondering when I would get more medical bad news. So far, so good. You are right to not ignore it, and to not let the doctors ignore it. I know I am not giving you any information or real help here; I just want to say hang in there, and pay attention to your body. Good luck!

jatx25 | @jatx25 | Sep 29, 2022

Thank you both for the very helpful responses! I was able to meet with an oncologist who has NET experience and my Gastroenterlogist regarding the liver lesion. They both believe the lesion is a hemangioma and will just watch it for any changes via the yearly CT Scans the oncologist ordered for the NETs. Fortunately, he's versed in the gallium-68 scan and that's exactly what he wants to do in about a year from now. Outside of that, they both just want me to focus on "re-learning" what "normal" feels like in my body (I had a hysterectomy in June due to large fibroids, and two "surprise" surgeries while they were at it to remove extensive endometriosis and my appendix, which is how the NET was discovered) so I can report anything that feels "not normal" if needed.

Take Care,
Jennifer