Long Time Survivor With Concerns re Metastasis

@gneiss50, I'm tagging other members like @carrie55 @hopeful33250 @margaret12 @avawein @harley4650 @sandy23 so they can share their follow-up protocols and testing with you.

Gneiss, have you considered contacting Mayo Clinic to inquire about getting an appointment to re-evaluate?

Hi,

1 year ago I had surgery to remove two liver mets. My surgeon said that he thought the tumors were too small to be producing the amount of serotonin found in my blood so he and my oncologist wanted me to keep getting scans and blood work every 6 months. Scans show I have two small “hot” lymph nodes in my neck and diffuse, very faint regions in the liver and abdomen - nothing they can do surgery on. I’m on Lanreotide and that does seem to be helping the fatigue I was having and reduced my flushing from about 3 a day to 4 a week, however, it does give me diarrhea. So, I guess my treatment is just to stop any new tumors from growing. From what I understand, I will always have tiny/small NETs in my body unless a new treatment comes along. All in all, I’m doing well and hopeful about the future. Hope you find answers for your concerns.

Hello @gneiss50

I appreciate you sharing your journey with NETs. Many of us with NETs share a similar journey. I had my first surgery in the duodenal bulb in 2003, then again in 2005 and the last one in 2016. They have been small and so far, no metastasis but NETs is always in the back of my mind. Like you, I do function fairly well.

Since the Mayo doctors recommended regular follow-up, I would be inclined to follow their advice. Personally, I meet with a GI specialist, at a university medical center that is about a one-hour drive from where I live. Every other year I have an upper endoscopy and in the in-between years I have an MRI of the abdomen (I have pancreatic cysts) and I also have blood work to check on the Serotonin levels and the urine tests to check the 5-HIAA,

Since the last surgery in 2016, all seems to be stable, and I feel reasonably well, outside of the fatigue that you mentioned and the digestive disturbances that come with repeated surgeries of the upper digestive tract.

For your follow-up, Mayo would be a good place in that they originally worked with you. If you live a distance from Mayo, you might consider another NETs specialist. If you look on the Carcinoid Cancer Foundation (CCF) website, you will find a list of doctors who are considered NET specialists. You might find someone else who can treat you closer to home.

@gneiss50, how long has it been since your last follow-up with blood work, etc.?

Thank you, @hopeful33250, for the sound advice. I will be seeing my regular doctor this month, and will talk with him about follow-up testing. I have not had the carcinoid blood work in 10 years because I stopped seeing the one oncologist in the state who had any familiarity with the disease. My state has no doctors listed as specialists in this disease. I have regular check-ups with my gastro doctor for colonoscopies, which have always been clean because the tumors were above the tested area, but he sees no need to do the tests unless I have symptoms, but is open to doing whatever I think is needed.He has communicated with Mayo about my early diagnosis and treatment. He admits that he has seen only one other carcinoid case in his practice history, and knows very little about it. Some days I think I am worrying needlessly, and other days I know I don't want to find that those little demon cells have been growing undetected. My first step is to talk to my doctor and maybe my gastro doc.

I'm glad to hear that you will request a follow-up, @gneiss50. If you go to the CCF website, they have good suggestions for follow-up tests. NETs are small little cells, and they are slow growing so it's a good idea to keep on top of them.
Here is a link to some information that you can share with your GI doctor:
--Diagnosis and Follow-Up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
Will you post again with any questions about the tests needed? Also, will you post an update when you visit with your doctor?

Thank you for the information and support. I will look at these sites and take the information to my doctor when I see him in two weeks. I will post about my plans and testing.

I want to report in on my current situation. My GP referred me to a local hematologist, who ordered both urine and blood tests (from referral to first appointment was two months.) Both showed abnormally high levels of the carcinoid markers, so she ordered a doctotate (sp?) scan. I had it a week ago, and have an appointment with the hematologist next week. Unless the scan shows no growth at all, I will try to get an appointment with Mayo Jacksonville, since that is who made my original diagnosis and provided treatment. Coincidentally, my brother has been undergoing octreotide (I think) treatment for carcinoid tumors in his liver. After more than a year of monthly injections, he says the latest scan showed that the tumors have disappeared. I certainly hope so. He says that he will take the injections the rest of his life.

The hematologist's PA called me yesterday with my scan results. I have small tumors in my liver and larger, more numerous tumors in my abdomen/pelvic area. I see the doctor next Thursday to talk about treatment. I like the way this clinic handles patients, but I still would feel better about going back to Mayo for a second opinion and treatment, especially if it involves surgery. I am relieved that the tumors had not spread to my chest area or other organs, but the liver tumors scare me. Thank you to all who post your own carcinoid travels here, and thank you, Teresa, for mentoring this group.

@gneiss50

I am so pleased that you have had the additional tests as a follow up. The Dotatate scan is one of the best in detecting NETs. It will be good to follow up with the doctor and then with Mayo, if you feel more comfortable there.

I'm grateful that Mayo Connect has been helpful in encouraging you in this process. Lots of our members in the NETs discussion group have had NETs in the liver and with appropriate treatment they live with these tumors for many years.

Will you continue to post after your next appointment?

Yes, I will post after I have talked with the hematologist. Thank you for your support!