Share this:
markbrinkley
@markbrinkley

Posts: 4
Joined: Nov 14, 2018

New to Mayo: MEN1 with duodenum NET G1

Posted by @markbrinkley, Dec 11, 2018

Dx- MEN1 with duodenum NET G1. Heading to Mayo on 12/17. Just initial evaluation and a couple of labs set. At appt set up they said be prepared for 4-5 day stay. What will the rest of the time be like if nothing set up for now? Will there be a lot of just waiting?

REPLY

Hello @markbrinkley and welcome to Mayo Connect.

I'd like to invite @tomewilson to this discussion as his wife has been treated at Mayo for NETs as well. Perhaps he can give you some more information. I am pleased to know that you will be seen at Mayo, they have a great team there.

I have had surgeries for three NETs in the duodenal bulb, so I can understand, just a little, how concerning this can be.

If you care to share more, I would be interested in knowing what kind of symptoms you had that led to this diagnosis. Also, what types of diagnostic tests were used? (I'm assuming an upper endoscopy and biopsy was part of the diagnostic procedure.) Do you have any carcinoid syndrome symptoms, like diarrhea, flushing, etc.?

@hopeful33250

Hello @markbrinkley and welcome to Mayo Connect.

I'd like to invite @tomewilson to this discussion as his wife has been treated at Mayo for NETs as well. Perhaps he can give you some more information. I am pleased to know that you will be seen at Mayo, they have a great team there.

I have had surgeries for three NETs in the duodenal bulb, so I can understand, just a little, how concerning this can be.

If you care to share more, I would be interested in knowing what kind of symptoms you had that led to this diagnosis. Also, what types of diagnostic tests were used? (I'm assuming an upper endoscopy and biopsy was part of the diagnostic procedure.) Do you have any carcinoid syndrome symptoms, like diarrhea, flushing, etc.?

Jump to this post

Certainly willing to share more. I have been on PPI for 20 yrs, present dosage is 120 mg omeprazole/daily. In 9/2013 gastrin tested for first time and was 1400 while on PPI (80 mg/da at the time). Explosive diarrhea and hospital visit with pancreatitis. CT discovered pancreatic cyst. Follow up with Endocrinologist produced series of tests that we all have been through and a DNA sequencing. DNA result was autosomnal dominant MEN1 positive. Present level of PPI (120mg/da) seems to control diarrhea effectively, unless an episode occurs, then all bets are off. This will occasionally based on diet usually – too much fat or strangely salad. Flushing is less frequent – I joke with the girls in my house that I have "hot flashes", I get the eye roll.:) Persistent abdominal pain/ache with intermittent sharp pain on right side. Pain radiates to right mid back (behind lower part of ribs to just below ribs). Some bone pain in hips and spine, however this is intermittent as well. Reflux is worsening so I am sure an adjustment to meds are needed, however at 120 mg/day I am not sure what is next.

I have had EDGs and EUS multiple times at least 4 in the last four years, MRI, CTs. The latest EDG identified a nodule, biopsy indicated further review needed. EUS, indicated 3mm submuosa involved tumor. Path report indicates stained for NET gastrinoma Ki-67 of 1%. Interesting that no scan has identified the tumor to date, suspect that is due to size or how the contrast is applied and pics are taken – timing is everything.

Desire from Mayo is where I am on the spectrum of MEN1/NET prognosis, treatment plan and what is next step.

@markbrinkley

Certainly willing to share more. I have been on PPI for 20 yrs, present dosage is 120 mg omeprazole/daily. In 9/2013 gastrin tested for first time and was 1400 while on PPI (80 mg/da at the time). Explosive diarrhea and hospital visit with pancreatitis. CT discovered pancreatic cyst. Follow up with Endocrinologist produced series of tests that we all have been through and a DNA sequencing. DNA result was autosomnal dominant MEN1 positive. Present level of PPI (120mg/da) seems to control diarrhea effectively, unless an episode occurs, then all bets are off. This will occasionally based on diet usually – too much fat or strangely salad. Flushing is less frequent – I joke with the girls in my house that I have "hot flashes", I get the eye roll.:) Persistent abdominal pain/ache with intermittent sharp pain on right side. Pain radiates to right mid back (behind lower part of ribs to just below ribs). Some bone pain in hips and spine, however this is intermittent as well. Reflux is worsening so I am sure an adjustment to meds are needed, however at 120 mg/day I am not sure what is next.

I have had EDGs and EUS multiple times at least 4 in the last four years, MRI, CTs. The latest EDG identified a nodule, biopsy indicated further review needed. EUS, indicated 3mm submuosa involved tumor. Path report indicates stained for NET gastrinoma Ki-67 of 1%. Interesting that no scan has identified the tumor to date, suspect that is due to size or how the contrast is applied and pics are taken – timing is everything.

Desire from Mayo is where I am on the spectrum of MEN1/NET prognosis, treatment plan and what is next step.

Jump to this post

I appreciate you sharing additional information, @markbrinkley. I have had three very small NETs in the duodenal bulb. The first one was just .9 cm, the second was .3 and the last one was also small but I don't require the dimensions. I take it from the list of tests that you have never had a 68Ga DOTATATE Positron Emission Tomography (PET), which is the newest diagnostic tool for diagnosing NETs. Here is a link regarding this scan, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/. Also, a serotonin blood test is often used.

I hope that another NET patient at Mayo will respond to your request about the procedures at Mayo for a new NET patient, but until then I trust that you will have a good appointment and find answers that you need on the 17th.

I would like to hear from you when you see the Mayo staff. Will you post again?

@hopeful33250

I appreciate you sharing additional information, @markbrinkley. I have had three very small NETs in the duodenal bulb. The first one was just .9 cm, the second was .3 and the last one was also small but I don't require the dimensions. I take it from the list of tests that you have never had a 68Ga DOTATATE Positron Emission Tomography (PET), which is the newest diagnostic tool for diagnosing NETs. Here is a link regarding this scan, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/. Also, a serotonin blood test is often used.

I hope that another NET patient at Mayo will respond to your request about the procedures at Mayo for a new NET patient, but until then I trust that you will have a good appointment and find answers that you need on the 17th.

I would like to hear from you when you see the Mayo staff. Will you post again?

Jump to this post

@hopeful33250, Yes I will update as I proceed through Mayo. My local gastro has suggested a 68GA scan, so hoping I meet the indications for one at Mayo. It will certainly provide answers some of my questions. Do you mind sharing what your treatment plan was for your d-nets?

@markbrinkley

Sure, I have had surgeries for all three NETs with no other treatment beyond the surgeries. The first one was in 2003, then in 2005 and again in 2016. The one in 2016 surprised everyone, as I had been told that after 10 years of being free from a new NET the likelihood of getting another was quite rare. As you can see, these cells are so small and undetectable from normal testing that it is unwise to say that you are ever free from them (this of course is my opinion and is based on my own personal experience).

I have yearly blood work for Serotonin levels, a 24 urine collection test that looks for carcinoid activity and both are usually normal. I have upper endoscopies on a regular basis to make sure that no new NET is showing up in the duodenal bulb. I have yet to have the 68GA scan but I've discussed it with my doctor and I will probably have that as well. I've been having some flushing and bone pain (the bone pain is usually when I am lying down). I also have an indolent lesion on the liver which does not appear to be metastasis and I have regular MRIs to look at that as well as increased pancreatic cysts that are slowly growing and increasing in number.

That is my story with NETs. The concern about new NETs never goes away completely, but I try to keep busy with other things which certainly helps. You have come into this diagnosis at a good time (if you can ever say such a thing about any type of cancer) as there are new diagnostic tests available, like the GA68, as well as new treatment options to control symptoms of flushing, diarrhea, etc.

Wishing you well and looking forward to hearing from you again. If you have anymore questions, please ask!

I, too, was told after 10 years I could relax. But in year 10, my gastroenterologist saw a “skin tag” in the same location as original rectal carcinoid. So now, Teresa, you have caused me to have questions. If they are too personal, please just ignore me. Are “increased pancreatic cysts” related to the duodenal tumors? If so, is there no treatment for them? Are they believed to be harmless? When you say bone pain, can you differentiate from aches caused by, say, flu or osteoarthritis or inflammation? Thank you.

@mgreene

I, too, was told after 10 years I could relax. But in year 10, my gastroenterologist saw a “skin tag” in the same location as original rectal carcinoid. So now, Teresa, you have caused me to have questions. If they are too personal, please just ignore me. Are “increased pancreatic cysts” related to the duodenal tumors? If so, is there no treatment for them? Are they believed to be harmless? When you say bone pain, can you differentiate from aches caused by, say, flu or osteoarthritis or inflammation? Thank you.

Jump to this post

Hello @mgreene
At this point the pancreatic cysts appear to be harmless, but given my history they are watched with an MRI periodically. The bone pain may be related to osteopenia or low bone mass. Each person's experience is different. Is your doctor a NET. specialist? Try to take care of yourself, ask your doctor questions and get second opinions if you need to, but try not to read too much into the experiences of others.

If you have any other questions, please let me know.

@markbrinkley

@hopeful33250, Yes I will update as I proceed through Mayo. My local gastro has suggested a 68GA scan, so hoping I meet the indications for one at Mayo. It will certainly provide answers some of my questions. Do you mind sharing what your treatment plan was for your d-nets?

Jump to this post

Hello @markbrinkley
As I see that your appointments at Mayo started on the 17th I was just wondering how you were doing.
Have the Mayo NET specialists been able to give you a better understanding of the MEN1 with duodenum NET G1 diagnosis?

@hopeful33250

Hello @markbrinkley
As I see that your appointments at Mayo started on the 17th I was just wondering how you were doing.
Have the Mayo NET specialists been able to give you a better understanding of the MEN1 with duodenum NET G1 diagnosis?

Jump to this post

Took abit to get referred to NET team, as I started out in general GI. Got the tests ordered and accomplished to further investigation. Good news in that area effected is limited based on DOTATATE scan. Duodenum, pancreas and possible antrum stomach. EUS and pathology confirmed gastrinoma in duodenum (small 6mm) and pancreas with cluster of micro tumors (10mm). All in close proximity. Next stop is oncology to determine best approach. 1/11 is next appt due to holidays.

@markbrinkley

Took abit to get referred to NET team, as I started out in general GI. Got the tests ordered and accomplished to further investigation. Good news in that area effected is limited based on DOTATATE scan. Duodenum, pancreas and possible antrum stomach. EUS and pathology confirmed gastrinoma in duodenum (small 6mm) and pancreas with cluster of micro tumors (10mm). All in close proximity. Next stop is oncology to determine best approach. 1/11 is next appt due to holidays.

Jump to this post

I appreciate your update, @markbrinkley. You did receive good news about the limited area affected.
I hope that your appointment with oncology gives you a clarity on the right procedure(s) to help you.
How are you feeling now? Any symptoms at all?

Please login or register to post a reply.