1. < Neuroendocrine Tumors (NETs)

What’s next: Seeking advice on how to navigate diagnosis appointments?

Posted by phoebeghostwriter @phoebeghostwriter, Jan 25, 2022

Hi there! I’ve been posting recently and Thank god I asked about the test and raised my concerns. Before Mayo, I’m flying to MD Anderson tomorrow. Ironically the only thing that anyone took seriously was the mircoandenoma but now it does seem like something is a fowl in my small bowel. Anything I can do to lower serotonin now to keep myself safe? Ok to take pancreatitis enzymes? Or supplements not to take? It’s crazy that this all started with one cortisol test that I ordered for myself in November when I had sudden weight loss…

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

phoebeghostwriter | @phoebeghostwriter | Feb 7, 2022
In reply to @rickclem "Hello. I can’t add value to your insulin growth factor question, but is your glucose low..." + (show)
@rickclem

Hello. I can’t add value to your insulin growth factor question, but is your glucose low or are you having hypoglycemic episodes ?

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@rickclem - in December I was hypoglycemic at night. So I’d wake up sweating and sometimes the monitor would dip below 70- not to bad. However, while I’ve been seeking a diagnosis my lasting glucose has been rising.

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Rc | @rickclem | Feb 7, 2022
In reply to @phoebeghostwriter "Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of..." + (show)
@phoebeghostwriter

Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of 381- I have insulin growth of 285. My creatine was also low. My chromin G was normal as was the 24 hour HPPA test. I’m still seeking a diagnosis. I have my follow up with my doctor from MD Anderson Monday via phone and I also was able to schedule a appointment with a carnoid specialist in Miami prior to Mayo. However I’m not sure what generally happens next. Do doctors typically order a Gallium 68 now? Biopsy? Should I push hard for a scan now? Would anyone provide Somatostatin at this point or address the glucose or creatine? Any shared experiences would be welcomed. I’m not looking for medical advice just an idea on having to navigate appoints and how quickly things may or may not move or questions to ask. Thank you!

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You will learn a lot with your Mayo doctor and it should move quickly. Gallium 68 Pet Scans are used to diagnose / identify Neuroendocrine Tumors (if that is what you / your Mayo doctor is suspecting based on your symptoms/ tests). They provide great detail. Biopsy could potentially follow if something identified.

Mayo has very experienced NeT specialists, which I assume they would refer you to, if you are not scheduled to see one already. Seeing the correct specialist is the most important key.

Some NETs can secrete insulin causing low or volatile glucose levels (can be different than carcinoid NETs). I’m in no way suggesting this could be cause of your low glucose. However, since this is a NET chat support site, I thought I would mention it. They have different blood tests to determine this. If your glucose is often low, particularly in morning (fasting), it’s worth asking your doctor about.

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2 replies
phoebeghostwriter | @phoebeghostwriter | Feb 8, 2022
In reply to @rickclem "You will learn a lot with your Mayo doctor and it should move quickly. Gallium 68..." + (show)
@rickclem

You will learn a lot with your Mayo doctor and it should move quickly. Gallium 68 Pet Scans are used to diagnose / identify Neuroendocrine Tumors (if that is what you / your Mayo doctor is suspecting based on your symptoms/ tests). They provide great detail. Biopsy could potentially follow if something identified.

Mayo has very experienced NeT specialists, which I assume they would refer you to, if you are not scheduled to see one already. Seeing the correct specialist is the most important key.

Some NETs can secrete insulin causing low or volatile glucose levels (can be different than carcinoid NETs). I’m in no way suggesting this could be cause of your low glucose. However, since this is a NET chat support site, I thought I would mention it. They have different blood tests to determine this. If your glucose is often low, particularly in morning (fasting), it’s worth asking your doctor about.

Jump to this post

@rickclem thanks- yes, I will definitely ask- I tried a couple times to let Mayo know about my recent labs and forewarn them that I may need GI/NET evaluation as it originally seemed like a pituitary issue and Cushing but I’ve muscle wasting in my legs and arms. They said wait for internal medicine- I just pray it’s not a long term around time. It’s harder to get out of bed in the morning. I have a young son and I am calmer now and more patient but I every day thst goes by without a diagnosis is one more day that things can get worse. Only 5 months ago I was a go getting mom taking my son on play dates and keeping everyone on schedule and now it’s all fallen apart. I just hope and try to have faith that things can get better, but the reality is still that I need action on my case. So I have to give my battle to God and faith in the timing-but it’s a struggle.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 9, 2022
In reply to @rickclem "You will learn a lot with your Mayo doctor and it should move quickly. Gallium 68..." + (show)
@rickclem

You will learn a lot with your Mayo doctor and it should move quickly. Gallium 68 Pet Scans are used to diagnose / identify Neuroendocrine Tumors (if that is what you / your Mayo doctor is suspecting based on your symptoms/ tests). They provide great detail. Biopsy could potentially follow if something identified.

Mayo has very experienced NeT specialists, which I assume they would refer you to, if you are not scheduled to see one already. Seeing the correct specialist is the most important key.

Some NETs can secrete insulin causing low or volatile glucose levels (can be different than carcinoid NETs). I’m in no way suggesting this could be cause of your low glucose. However, since this is a NET chat support site, I thought I would mention it. They have different blood tests to determine this. If your glucose is often low, particularly in morning (fasting), it’s worth asking your doctor about.

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Hello @rickclem and welcome to Mayo Clinic Connect. I appreciate your contributions to our NET discussion. You sound knowledgeable. Are you a NETs patient as well?

I look forward to getting to know you. Could you share about your journey with NETs as you are comfortable doing so?

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Rc | @rickclem | Feb 10, 2022
In reply to @phoebeghostwriter "Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of..." + (show)
@phoebeghostwriter

Hi there! So I had MD Anderson’s blood tests come in- so along with serotonin of 381- I have insulin growth of 285. My creatine was also low. My chromin G was normal as was the 24 hour HPPA test. I’m still seeking a diagnosis. I have my follow up with my doctor from MD Anderson Monday via phone and I also was able to schedule a appointment with a carnoid specialist in Miami prior to Mayo. However I’m not sure what generally happens next. Do doctors typically order a Gallium 68 now? Biopsy? Should I push hard for a scan now? Would anyone provide Somatostatin at this point or address the glucose or creatine? Any shared experiences would be welcomed. I’m not looking for medical advice just an idea on having to navigate appoints and how quickly things may or may not move or questions to ask. Thank you!

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Hello. My wife is a PNET patient at Mayo Rochester - I am her caregiver / advocate. I will follow up and share.

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1 reply
Rc | @rickclem | Feb 10, 2022
In reply to @phoebeghostwriter "@rickclem thanks- yes, I will definitely ask- I tried a couple times to let Mayo know..." + (show)
@phoebeghostwriter

@rickclem thanks- yes, I will definitely ask- I tried a couple times to let Mayo know about my recent labs and forewarn them that I may need GI/NET evaluation as it originally seemed like a pituitary issue and Cushing but I’ve muscle wasting in my legs and arms. They said wait for internal medicine- I just pray it’s not a long term around time. It’s harder to get out of bed in the morning. I have a young son and I am calmer now and more patient but I every day thst goes by without a diagnosis is one more day that things can get worse. Only 5 months ago I was a go getting mom taking my son on play dates and keeping everyone on schedule and now it’s all fallen apart. I just hope and try to have faith that things can get better, but the reality is still that I need action on my case. So I have to give my battle to God and faith in the timing-but it’s a struggle.

Jump to this post

Hang in there. Im hoping you will get some some help.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 15, 2022

@phoebeghostwriter

I'm really excited for you and others in our NET group to attend the Carcinoid Cancer Foundation's Meet the Expert on Thursday, Feb. 17, from noon to 1 p.m. EST. The reason for my excitement is that Mayo Clinic's Dr. Halfdanarson will be speaking. Many of you who have been treated at Mayo for NETs have undoubtedly met with Dr. Halfdanarson. He is an excellent speaker and well trained in NETs. This will be both a Facebook Live presentation as well as available on Youtube for those not connected with Facebook. Here is the link for more information,
https://www.facebook.com/Carcinoid/photos/a.434139689226/10159025786344227/

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 15, 2022

@remi @jhilbish @cvb @lenorahaston @captain1950 @khauert @tomewilson @alphanumeric @gulzar @megansims @netpatient @kate12345 @amd12 @tatteesmom3 @elm60

I'm really excited for you and others in our NET group to attend the Carcinoid Cancer Foundation's Meet the Expert on Thursday, Feb. 17, from noon to 1 p.m. EST. The reason for my excitement is that Mayo Clinic's Dr. Halfdanarson will be speaking. Many of you who have been treated at Mayo for NETs have undoubtedly met with Dr. Halfdanarson. He is an excellent speaker and well trained in NETs. This will be both a Facebook Live presentation as well as available on Youtube for those not connected with Facebook. Here is the link for more information,
https://www.facebook.com/Carcinoid/photos/a.434139689226/10159025786344227/

REPLY
1 reply
EM | @elm60 | Feb 15, 2022

Hi Teresa! I am very excited to see this CFF Luncheon with the Experts! Dr Thor is one of the top NET Specialists in the country! I encourage everyone to to attend!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 16, 2022
In reply to @elm60 "Hi Teresa! I am very excited to see this CFF Luncheon with the Experts! Dr Thor..." + (show)
@elm60

Hi Teresa! I am very excited to see this CFF Luncheon with the Experts! Dr Thor is one of the top NET Specialists in the country! I encourage everyone to to attend!

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I appreciate those encouraging words, @elm60. Was he your doctor?

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