Connect
Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?
I was diagnosed in ‘21 (51 y/o) with SB net and metastatic tumor in the mesentery lymph nodes. All successfully resected. The metastasis in mesentery lit up on scan, primary tumor DID NOT, they had to find by hand. Normal recovery. I’m very active and at the time had completed 30 years of clean living and exercise in the Army, which I keep up with today. I’ve always had lower abdominal pain (post surgery) which moved to a pinpoint location on right side. My bowel movements and stomach fine until last year. I began to experience, gas, bloating, extremely thin stool, incomplete evacuation, nausea daily. The follow up petscans were typical until this past October. There was slight uptake and fat stranding in the mesentery. I started lanreotide for 3 months and re-scanned and the previous spots were basically unnoticeable. Interestingly, this was the only time since original diagnosis my Chromogranin A went below 200 (49). The Drs assured me I had no cancer and thought that CgA decrease was insignificant and NOT attributed to lanreotide (?) So far upper and lower scopes clear. GI doc has flip flopped from Creon, to fiber to miralax. The answer is continuously- all symptoms I have are due to the original surgery. I’m at the end of my rope with this. I am constantly switching up techniques to cure my GI problems work full time etc. I want this fixed! Am I having a recurrence that Petscan can’t pick up? Are my hormones amiss from an unseen tumor on scan and causing these problems? Should I be concerned for hidden primary in pancreas, liver etc? Any suggestions or similar stories?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Connect
"The Drs assured me I had no cancer and thought that CgA decrease was insignificant and NOT attributed to lanreotide (?)" I'm sorry but I have to take exception to this statement. I'm not a doctor. I'm just a patient who has talked to a lot of cancer doctors. I asked my Oncologist if there is such a thing as "cancer free" after getting diagnosed with Neuroendocrine cancer? He said "no". He went on to explain that the idea of millions of cancer cells just disappearing is not very feasible no matter what you do. Now, people can live a long time with NETs. That has been proven. Lanreotide can help. Been on that 2 years myself. But, will I ever be cancer free? I don't think that is currently possible. Best of luck to you.
-
Like -
Helpful -
Hug
4 ReactionsThank you! Very good points. It’s very difficult to find Physicians who are well versed in NETs. I wish you the best of luck with your treatment.
-
Like -
Helpful -
Hug
3 ReactionsHi Mike. Do you know what kind of PET scan you are getting? For example, A NET PET scan, specifically a Ga-68 Dotatate PET/CT scan, is a diagnostic tool used to find and map neuroendocrine tumors in the body. Also, is your oncologist a NET specialist?
-
Like -
Helpful -
Hug
2 ReactionsAgree 100%; although it’s a slow growing cancer, there is no cure for NETS.
-
Like -
Helpful -
Hug
4 ReactionsDo you have a NETS oncology surgeon specialist & a regular oncologist? Also curious why you only had 3 injections? I’ve had 2 surgeries & will be on Octreotide injections forever or until they are no longer effective, then on to the next medicine. Recent CT showed only one new area of concern. Will have ga68 dota pet scan done next month to see progress.
-
Like -
Helpful -
Hug
1 ReactionThank you. The scan was a GA -68 Dotatate Petscan. The Physician is familiar with NETs but I wouldn’t say that it is his specialty. My original Dr (truly a specialist) retired.
-
Like -
Helpful -
Hug
1 ReactionThank you. The following finding (along with symptoms) caused the treatment with Lanreotide:
“Non Specific mild uptake noted in the mid abdominal mesentery to the left associated with
subtle fat stranding but no definite mass or adenopathy. This could be related to mild
inflammation but attention on short interval follow-up DOTATATE PET/CT or enhanced CT would be recommended to exclude an early developing lesion.
2. Postsurgical changes without definite somatostatin receptor expressing tumor or metastasis.”
The follow up 90 days later was essentially the same. I decided to stop since there was no tumor on the scan and it did not help my symptoms. This cancer is so slow growing (sneaky) I feel they are missing something. -Mike
-
Like -
Helpful -
Hug
1 ReactionWhat do you mean when you say a long time?
-
Like -
Helpful -
Hug
1 ReactionDid your retired NETS Dr refer you to another NETS specialist? If not I would definitely ask for a referral or find a NETS specialist. It’s very important to see professionals that deal with this type of cancer. Good luck on your journey.
-
Like -
Helpful -
Hug
1 Reaction20+ years.