What topics do you want for the Neuroendocrine Support Group?

Posted by amandafl @amandafl, Sun, Sep 8 2:50pm

There’s a new Neuroendocrine Support Group that’s open to patients and caregivers over the phone (for those who aren’t local) and in person in Jacksonville, FL. Are there any topics that you want to discuss?

Liked by andre1221

I have a Neuro Endocrine Tumor of the Pancreas. 9-6-2019 second CT Scan SHOWED NEGATIVE GROWTH ON EXISTING NET MAYBE SLIGHT REDUCTION, but no new sighting of tumors or other abnormally. Tumor could have developed years ago while living a stressful lifestyle and smoking 40 + years ago. Constance surveillance is the continued diagnosis for the condition as Endoscopic test showed negative for existence of CANCER. Anyone with similar condition at one time, did your condition into the future from there develope into cancers?

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I would be helpful if someone could provide some basic navigation skills on how to understand our CT /MRI scans. The report shows a specific frame of reference, but accessing the scans in question is confusing . Just an idea!

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@124124eva

I would be helpful if someone could provide some basic navigation skills on how to understand our CT /MRI scans. The report shows a specific frame of reference, but accessing the scans in question is confusing . Just an idea!

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Hello @124124eva and welcome to Mayo Connect~

You have asked a very good question regarding understanding the MRI/CT scan results. In order to advocate for your own health needs, you do need to understand what is going on. You ask about "some basic navigation skills on how to understand our CT /MRI scans." Are you wondering about the language used in the CT/MRI results or more about the dimensions of any tumor, etc.?

Many times, I've sat down with my doctor or his PA and asked these questions. Sometimes, I've even charted the differences I've seen from one year to another and questioned what the differences mean. Most doctors are very willing to sit down with you (or one of their skilled staff members) and explain this to you.

I look forward to hearing from you again with some more details about what it is you are trying to understand. Once again, welcome to Connect and thank you for this very interesting question!

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@124124eva

I would be helpful if someone could provide some basic navigation skills on how to understand our CT /MRI scans. The report shows a specific frame of reference, but accessing the scans in question is confusing . Just an idea!

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Thank you for the question. I understand what you mean about confusing results from MRI/CT. I have had some confusion myself so this sounds like a good topic. I wonder if we could also add in understanding your biopsy results?

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@hopeful33250

Hello @124124eva and welcome to Mayo Connect~

You have asked a very good question regarding understanding the MRI/CT scan results. In order to advocate for your own health needs, you do need to understand what is going on. You ask about "some basic navigation skills on how to understand our CT /MRI scans." Are you wondering about the language used in the CT/MRI results or more about the dimensions of any tumor, etc.?

Many times, I've sat down with my doctor or his PA and asked these questions. Sometimes, I've even charted the differences I've seen from one year to another and questioned what the differences mean. Most doctors are very willing to sit down with you (or one of their skilled staff members) and explain this to you.

I look forward to hearing from you again with some more details about what it is you are trying to understand. Once again, welcome to Connect and thank you for this very interesting question!

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Hi Teresa

Here is an example of what my MRI stated in Feb 2019 :.

There are at least three tiny subcentimeter transient hypervascular hepatic lesions with associated diffusion abnormality: at the junction of hepatic segments V and IVb (series 19/image 44 and series 11/image 104), at the level of the left portal vein at
the junction of hepatic segments IVa, IVb, V and VIII (series 19/image 39 and series 11/image 103) and in hepatic segment IVa (series 19/image 34 and series 11/image 101). Tiny metastases are not excluded.

When I go to locate the image 19 stated above, I can’t seem to locate the right frame. So basically, just showing us some navigation techniques will help us to be able to better understand what the radiologist is referring to.

As always, post doctor appointments, there are tons of questions you “wished” you would had asked!!

I thought this might be a good topic for the monthly meeting as well.

Thank you for listening!

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@amandafl

Thank you for the question. I understand what you mean about confusing results from MRI/CT. I have had some confusion myself so this sounds like a good topic. I wonder if we could also add in understanding your biopsy results?

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Great idea about biopsy results as well!

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I have been heavily engaged in NETs since my wife was diagnosed at Mayo Rochester in the fall of 2015. Since diagnosis, she has lost 40 pounds. While she had some extra she was within the normal weight range. The weight keeps slipping off and its harder and harder to regain. She has suffered from bouts of partial blockages that last 3-5 days and cause further weight loss (about 5 pounds each time). She receives Octreotide injections monthly 30 MG LAR.
Recently I was reading a publication from Tara Whyand who is a Oncology and Neuroendocrine Tumor Specialist Dietitian at The Royal Free Hospital, London (since 2012). She is considered a leading R.D. for NETs. It has been our experience that very little time and attention is placed on nutritional aspects of patients with NETs. For example, I just learned that those receiving Octreotide injections should get their B12 checked every 18 months. NET, NET (pun intended), more discussion around NETs nutrition would be helpful in my opinion.

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@tomewilson

I have been heavily engaged in NETs since my wife was diagnosed at Mayo Rochester in the fall of 2015. Since diagnosis, she has lost 40 pounds. While she had some extra she was within the normal weight range. The weight keeps slipping off and its harder and harder to regain. She has suffered from bouts of partial blockages that last 3-5 days and cause further weight loss (about 5 pounds each time). She receives Octreotide injections monthly 30 MG LAR.
Recently I was reading a publication from Tara Whyand who is a Oncology and Neuroendocrine Tumor Specialist Dietitian at The Royal Free Hospital, London (since 2012). She is considered a leading R.D. for NETs. It has been our experience that very little time and attention is placed on nutritional aspects of patients with NETs. For example, I just learned that those receiving Octreotide injections should get their B12 checked every 18 months. NET, NET (pun intended), more discussion around NETs nutrition would be helpful in my opinion.

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This is actually the discussion topic for our next meeting on Thursday, October 3rd at 5:30pm EST. The meeting is in Jacksonville, FL but there is a call in number for those who are not local and they welcome questions. I am attaching the information if you are interested.

7A1EE058-0147-4E61-A155-5E6273389CF7

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@amandafl

This is actually the discussion topic for our next meeting on Thursday, October 3rd at 5:30pm EST. The meeting is in Jacksonville, FL but there is a call in number for those who are not local and they welcome questions. I am attaching the information if you are interested.

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Thank you.

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I joined the NET support group because my father had an intestinal carcinoid tumor; my half sister had NETS removed from her lung and another paternal relative had a Merkel Cell Carcinoma. I worry that NETs could show up in myself or other family members. And wonder if there are tests that could be done to discover something sooner rather than later.

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@amandafl

This is actually the discussion topic for our next meeting on Thursday, October 3rd at 5:30pm EST. The meeting is in Jacksonville, FL but there is a call in number for those who are not local and they welcome questions. I am attaching the information if you are interested.

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I, too, am very interested in learning more about nutrition/diet to know what to eat or not eat with my NETS of the small intestine. I have a conflict with the Thursday, Oct 3, 5:30 EST informational meeting. Is is possible to get a transcript of this meeting, please?

Liked by Angie T

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I like info on dietary suggestions. In the past few months I’ve been diagnosed with Gastric NET1, Chronic Gastritis, Chronic Gastric Inflammation, Gastric AutoImmune Disease, Barrett’s Esophagus. I have nearly daily bowel issues, usually occurring multiple time if not all day.

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My wife (NETs) and I are very interested in nutrition. In 2015 and 2016 she had two open abdominal surgeries to remove her primary (ileus), gallbladder and liver METs. She has 50 litter liver NETs now. Her issue is she's had 8 partial bowel obstructions during the last 18 months. Each one causes her to lose about 5 pounds. Between these and the surgeries shes down 40 pounds. While her BMI is 23, she struggles to put weight on (food doesn't taste good) and she's worried about what might trigger another blockage. They come on light a light bulb with a pain level of 10. She usually gets IV fluids for 3-5 days to make sure she doesn't dehydrate.

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@gaylejean

I, too, am very interested in learning more about nutrition/diet to know what to eat or not eat with my NETS of the small intestine. I have a conflict with the Thursday, Oct 3, 5:30 EST informational meeting. Is is possible to get a transcript of this meeting, please?

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@amandafl and @michellewalsh: do you plan to record and/or transcribe the meetings? It is easy to record them. Transcribing maybe not so easy.

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I would like to learn about various ways to deal with pain. There seem to be several medications you can take with varying side effects. Some, like constipation, make the pain even worse. What other options are there? We have tried CBD, Essential Oils and that has not helped. Can we talk about pain pumps and how they work? Appreciate your putting on these support group meetings. I wish I had known about this when we started our journey at Mayo in 2016!! How come no one told us about Mayo Connect and the support group????

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