Long Time Survivor With Concerns re Metastasis

Another PET scan post TACE treatments is the plan. Was looking at Hopkins for another opinion but will also check out link you sent for Mayo clinic. Stay well and try and enjoy the ride...nothing in life is guaranteed and I view this journey as a learning experience. In a weird way I'm excited! All the best, Tom

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.?

How old were you when you got diagnosed?
I usually hear prognosis is best for young people

Hi,
I was actually diagnosed with a metastasized carcinoid of the appendix in 1974 at Mayo Rochester following discovery of a mass during a pelvic exam. I am now 76. Very fortunately for me I have had few if any symptoms over these last decades, including giving birth to twin daughters at the age of 40. I did acupuncture during the decade after diagnosis when no medical treatments were available. I did return to Mayo AZ for followup about 5 years ago just to check in, with symptoms of chronic diarrhea, for CT and nuclear scans and the usual NET blood tests. Tests were all negative but I do have numerous tumors in my abdominal cavity. Was offered debunking surgery but did not pursue.

Hi,
I was actually diagnosed with a metastasized carcinoid of the appendix in 1974 at Mayo Rochester following discovery of a mass during a pelvic exam. I am now 76. Very fortunately for me I have had few if any symptoms over these last decades, including giving birth to twin daughters at the age of 40. I did acupuncture during the decade after diagnosis when no medical treatments were available. I did return to Mayo AZ for followup about 5 years ago just to check in, with symptoms of chronic diarrhea, for CT and nuclear scans and the usual NET blood tests. Tests were all negative but I do have numerous tumors in my abdominal cavity. Was offered debunking surgery but did not pursue.

Hello @charlenesf and welcome to the NETs support group on Mayo Connect. Thank you for sharing your remarkable story of your journey with NETs. It sounds as if you have lived a full life with NETs and with very few symptoms.

You mentioned, "I did acupuncture during the decade after diagnosis when no medical treatments were available." How was acupuncture helpful to you at that time? Were there other lifestyle changes that helped you?

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis in 2014 with likely no future progression. However in 2018, discovered many liver mets which caused paraneoplastic autoimmune syndrome blasting clumps of antibodies onto my spinal cord causing neurological problems. after about 1 year of treatment including ablation of half the liver tumors I have been reasonably healthy and happy all thanks to my care at Mayo in Rochester. I have been on Lanretide injections every 28 days since 2018. now liver tumors are increasing and doctors have recommended Everolimus oral therapy or PRRT. I chose the oral Everolimus and took it for 12 days with fatigue, joint pains, and 7 painful mouth sores. I am off the drug for one week now to heal the sores. Wonder if these side effects will come back when I resume the Everolimus. Anyone have experience with this drug and any suggestions. thanks in advance.