1. < Neuroendocrine Tumors (NETs)

Long Time Survivor With Concerns re Metastasis

Posted by gneiss50 @gneiss50, Oct 6, 2022

I had surgery at Jacksonville Mayo 12 years ago to remove a section of my upper intestine and a pile of tumors in my abdomen. They told me that my condition was metastatic, although my pain and other symptoms "magically" disappeared. Their advice was to see a local oncologist for regular check-ups, which I did for a while. I saw the Mayo oncologist 10 years ago because I was having minor symptoms, and he told me that none of their imaging tests would show anything because remaining tumors would be too small to show up. He did say that I surely had tiny tumors remaining, because they knew they were unable to get them all. those symptoms have mostly dissipated, so I appear to be cancer free, but I know I am not.

My question is to others who have metastatic conditions but remain fairly healthy. Do you have regular blood and urine tests to check the 5-HIAA and blood markers? Is there an advantage in having these tests done occasionally? For my own peace of mind, I am thinking of going back to Mayo for a complete check-up, but am not sure they would think it is necessary. Meanwhile, I am grateful that I have not had the issues that many of you have, and I appreciate your sharing your journeys with this group

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 23, 2023
In reply to @hollywood817 "Another PET scan post TACE treatments is the plan. Was looking at Hopkins for another opinion..." + (show)
@hollywood817

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

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I agree @hollywood817, NETs is a journey as well as a learning experience!

As you said, "nothing in life is guaranteed..." Something for us all to remember.

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tyrol123 | @tyrol123 | Sep 27, 2023
In reply to @hopeful33250 "Hello @gneiss50 I appreciate you sharing your journey with NETs. Many of us with NETs share..." + (show)
@hopeful33250

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.?

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

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 27, 2023
In reply to @tyrol123 "How old were you when you got diagnosed? I usually hear prognosis is best for young..." + (show)
@tyrol123

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

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The type of tumor has more to do with prognosis than age. Some tumors are graded as more aggressive than others.

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charlenesf | @charlenesf | Oct 3, 2023

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.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2023
In reply to @charlenesf "Hi, I was actually diagnosed with a metastasized carcinoid of the appendix in 1974 at Mayo..." + (show)
@charlenesf

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.

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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?

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1 reply
charlenesf | @charlenesf | Oct 4, 2023
In reply to @charlenesf "Hi, I was actually diagnosed with a metastasized carcinoid of the appendix in 1974 at Mayo..." + (show)
@charlenesf

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.

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Sorry— de-BULKing surgery

REPLY
charlenesf | @charlenesf | Oct 4, 2023
In reply to @hopeful33250 "Hello @charlenesf and welcome to the NETs support group on Mayo Connect. Thank you for sharing..." + (show)
@hopeful33250

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?

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Acupuncture gave me hope for one thing, when there were no treatments to recommend. I also did experiment with a macrobiotic diet for several months during my first year.

REPLY
lyons1234 | @lyons1234 | Oct 5, 2023
In reply to @davisnrn "So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis..." + (show)
@davisnrn

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.

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Hello,
I was taking Everolimus 10mg for about 1 month then stopped when I became elegible for PRRT
treatment. I also got mouth sores about 3 weeks into it, I guess its a common side effect. My Dr
said he could give me something for the mouth sores. (very uncomfortable). I may have to go back on Everolimus if PRRT doesn't work. I have several metastatic carcinoid tumers plus liver stuff. I am still having classic carcinoid symptoms although they seemed to have decreased
somewhat.
Thanks
John

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