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ahtaylor
@ahtaylor

Posts: 25
Joined: Jan 07, 2017

NET - Insulinoma

Posted by @ahtaylor, Jan 21, 2017

Hello to All,
I am joining this group from the Diabetes/Endocrine group. In July 2015 I was diagnosed with 2 insulinomas – both removed surgically at DUMC in NC. The diagnostic work-up included a 5 day hospital stay (72 hour fast + complications) and the surgery was an 11 day hospital stay (typical stay for a Whipple procedure). About 3 months post surgery, I started having recurrent hypoglycemia symptoms very similar to my pre-op symptoms. Insulinomas are very difficult to diagnose and locate and so far they have not been able to locate a new tumor but do suspect there is regrowth of an old tumor or growth of a new one. That is what will bring me to Mayo next week. Anyone been through insulinoma testing at Mayo? Hopeful to be starting down a path to possibly find a resolution of daily hypoglycemia symptoms but nervous because I have walked down this path once already. Glad to see the new group on NETs. Thanks.

REPLY

@hopeful33250

This all sounds good, @amya. I'm sure you will be relieved to have this over. The laparoscopic sounds interesting. I wasn't aware that type of surgery could be done that way.

By the way, was the Gallium 68 Pet scan used to diagnose your insulinoma?

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No. They started with CT, didn't find. Endoscopic ultrasound found it. If it didn't they were going to do a calcium stimulation test.

I'm post second surgery at Mayo in Rochester. First one removed insulinoma from the head of my pancreas Sept 14, 2018, nine day stay. Was home in Michigan for 6 days and felt infection might be brewing possibly from drain site. Local hospital tried to put a new drain in where the first one had been ( was taken out at Mayo before I left) this reentry was difficult for them and they punctured my bile duct. I was there nine days with both a pancreatic leak and the bile duct was stented. I was able to fly back to Mayo, where they tried to stent / stop the pancreatic leak. Two procedures and two more trips to Mayo later, I made the decision to go for surgery again. On Nov 26, 2018 a different surgeon did an amazing surgery on me. He was able to save the pancreas ( I signed off to have possible 3/4 of it removed ). Once he got in, he found he was able to sew / attach the leak area to the bottom of my stomach. I'm post op four weeks and resting in Florida our primary home is in northern Michigan. We will fly once again to Mayo on Jan 8th to have that stent in the bile duct removed and a CT scan then meet with the surgeon. I am feeling better everyday. Some ups and fewer downs.
Mayo diagnosed me in about 40 mins. Then I went back for 72 hour test to prove it. I flunked the 72 hours test at noon the first day. I suffered with what I now understand was hypos….I called a real bad one an episode. I had three different Internist in 20 years, my husband is an MD. Had I not gone by myself of to Mayo. I would have died one day and never been diagnosed with insulinoma.

@marilyn2525

I'm post second surgery at Mayo in Rochester. First one removed insulinoma from the head of my pancreas Sept 14, 2018, nine day stay. Was home in Michigan for 6 days and felt infection might be brewing possibly from drain site. Local hospital tried to put a new drain in where the first one had been ( was taken out at Mayo before I left) this reentry was difficult for them and they punctured my bile duct. I was there nine days with both a pancreatic leak and the bile duct was stented. I was able to fly back to Mayo, where they tried to stent / stop the pancreatic leak. Two procedures and two more trips to Mayo later, I made the decision to go for surgery again. On Nov 26, 2018 a different surgeon did an amazing surgery on me. He was able to save the pancreas ( I signed off to have possible 3/4 of it removed ). Once he got in, he found he was able to sew / attach the leak area to the bottom of my stomach. I'm post op four weeks and resting in Florida our primary home is in northern Michigan. We will fly once again to Mayo on Jan 8th to have that stent in the bile duct removed and a CT scan then meet with the surgeon. I am feeling better everyday. Some ups and fewer downs.
Mayo diagnosed me in about 40 mins. Then I went back for 72 hour test to prove it. I flunked the 72 hours test at noon the first day. I suffered with what I now understand was hypos….I called a real bad one an episode. I had three different Internist in 20 years, my husband is an MD. Had I not gone by myself of to Mayo. I would have died one day and never been diagnosed with insulinoma.

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It is so good to hear from you, @marilyn2525. You have certainly been through a great deal, but I'm so glad that the previous problems are resolved and you are feeling better now. I'm sure you must be grateful for the help you got at Mayo.

Are there anymore follow-ups planned in the future?

@hopeful33250

It is so good to hear from you, @marilyn2525. You have certainly been through a great deal, but I'm so glad that the previous problems are resolved and you are feeling better now. I'm sure you must be grateful for the help you got at Mayo.

Are there anymore follow-ups planned in the future?

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Yes, I will fly back to Mayo Jan. 8 for a few days. Stent removal in bile duct, CT Scan & follow up with surgeon.

Hello, I've been through diagnoses and removal of an insulinoma tumor at Mayo Rochester….I live in Michigan. Just to be diagnosed was amazing when I had lived with symptoms for a good 15 years. I went to Mayo for a thyroid biopsy and to discuss my weight gain of five pounds a year. Once I talked to a metabolic specialist….she called me back regarding symptoms and told me they believe I have an insulinoma. My symptoms were "classic". I'm making my seventh trip to Mayo tomorrow. I can report that I'm now doing very well…second surgery was Nov. 26, 2018. I believe the physician who diagnosed me saved my life. I have great confidence in their surgeons as well, the team and nursing staff are great.
Six months since my first visit that changed my life.

@marilyn2525

Hello, I've been through diagnoses and removal of an insulinoma tumor at Mayo Rochester….I live in Michigan. Just to be diagnosed was amazing when I had lived with symptoms for a good 15 years. I went to Mayo for a thyroid biopsy and to discuss my weight gain of five pounds a year. Once I talked to a metabolic specialist….she called me back regarding symptoms and told me they believe I have an insulinoma. My symptoms were "classic". I'm making my seventh trip to Mayo tomorrow. I can report that I'm now doing very well…second surgery was Nov. 26, 2018. I believe the physician who diagnosed me saved my life. I have great confidence in their surgeons as well, the team and nursing staff are great.
Six months since my first visit that changed my life.

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Hello @marilyn2525

I'm so glad to hear that you are doing so well and that you found such great help at Mayo. Mayo Clinic is a remarkable place and you certainly can attest to that!

You mention that your symptoms were "classic." If you are comfortable doing so, could you please share what those symptoms were? Also, were you aware of any pancreatic problems prior to the diagnosis or was it only the thyroid problem that brought you to Mayo?

@hopeful33250

Hello @marilyn2525

I'm so glad to hear that you are doing so well and that you found such great help at Mayo. Mayo Clinic is a remarkable place and you certainly can attest to that!

You mention that your symptoms were "classic." If you are comfortable doing so, could you please share what those symptoms were? Also, were you aware of any pancreatic problems prior to the diagnosis or was it only the thyroid problem that brought you to Mayo?

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Hello Teresa,
To answer your question, I refer to my symptoms as classic because that is exactly what the Physician who diagnosed me said.
If I didn't eat frequently I would become nervous / scared, I would sweat and shake…inside and out. I believed I would soon faint or go into a coma. Eating and not moving much was how I managed to stay alive. I would rest as much as possible. I would tell my physicians and husband who is a physician how I felt, but no one took it seriously. I was very thin as a young person, at 45 I started to gain weight and began menopause. So to everyone including myself it looked like I was gaining and tired from menopause.
It was difficult to become over weight and try different diets and I did try to walk….but I just couldn't do it. I always felt it may have been due to a sugar problem and would ask my Dr. to please do a more thorough sugar test. On my last yearly exam my Dr. ask me why on earth I thought I had a problem as my Basic test show that my sugar is low, therefore I do not have diabetes or pre diabetes.
Two months later at Mayo…I'm told that " low sugar is a marker ". No one in 15 plus years ever suggested I see an endocrinologist.
Even an endo at Mayo who called me with results of my thyroid biopsy told me not to count on that diagnosis and ask me who told me I may have an insulinoma? I never told that physician to protect the other. My Dr back home told me it's so rare I doubt that it's true. To answer your question, I didn't know anything about the pancreas I never dreamed I would leave Mayo Clinic that week with an answer to the symptoms I had for so many years. It was the thyroid nodule and my weight gain that drove me to make an appointment with Mayo. No one ever suggested I go there. I came alone looking for an answer why I have the episodes when I don't eat.

Hello @marilyn2525
I so appreciate the information you provided. I have had three surgeries for NETs in the duodenal bulb and also have many slow growing pancreatic cysts as well as an indolent liver lesion and always feel concerned about the possibility of insulinoma. However, my sugar runs a bit high (A1C of 6.0).

Prior to going to Mayo did you ever have any MRI or CT of the pancreas? At Mayo did you have a biopsy of the pancreas of CT or MRI?

I appreciate your taking the time to answer these questions, but only as you feel comfortable doing so.

I never had a CT scan, MRI, or an Endoscoptic Ultrasound before. Mayo has done three CT Scans , and two endoscopic ultrasounds, I still have never had an MRI. I was done with the 72 hour fast by noon the first day. I did not have a biopsy of my pancreas ever. Nothing was ever explored about my pancreas in my life.

@marilyn2525

I never had a CT scan, MRI, or an Endoscoptic Ultrasound before. Mayo has done three CT Scans , and two endoscopic ultrasounds, I still have never had an MRI. I was done with the 72 hour fast by noon the first day. I did not have a biopsy of my pancreas ever. Nothing was ever explored about my pancreas in my life.

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@marilyn2525
I appreciate the information, @marilyn2525. I have had many of the symptoms as you, especially the cold sweats, shaking, etc. The only thing that has not happened is the low blood sugar. It is great to share these strange symptoms with others. I'm glad that you joined Mayo Connect. I also live in Michigan. How long of a drive is it for you to get to Mayo?

@hopeful33250

@marilyn2525
I appreciate the information, @marilyn2525. I have had many of the symptoms as you, especially the cold sweats, shaking, etc. The only thing that has not happened is the low blood sugar. It is great to share these strange symptoms with others. I'm glad that you joined Mayo Connect. I also live in Michigan. How long of a drive is it for you to get to Mayo?

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We haven't driven it yet. We are in Florida now for a few months. To drive from our home in Traverse City it's 10 hours. After the surgeries it was hell. Hope tomorrow isn't too much, as we have three airports starting from Sarasota. Where are you in MI ?

Teresa, did you have an insulinoma? So you had tumors in the duodenum bulb, what were those surgeries like. Who was your surgeon? Because of my pancreatic leak I needed a second big surgery, they did try procedures to no avail.

@marilyn2525

Teresa, did you have an insulinoma? So you had tumors in the duodenum bulb, what were those surgeries like. Who was your surgeon? Because of my pancreatic leak I needed a second big surgery, they did try procedures to no avail.

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No, it was said to be a NET. The first two surgeries were resections of the tumor. For the third surgery I went to U of Michigan and it was done through an endoscopy procedure. That was much easier. I'm in SE Michigan.

@marilyn2525

Hello Teresa,
To answer your question, I refer to my symptoms as classic because that is exactly what the Physician who diagnosed me said.
If I didn't eat frequently I would become nervous / scared, I would sweat and shake…inside and out. I believed I would soon faint or go into a coma. Eating and not moving much was how I managed to stay alive. I would rest as much as possible. I would tell my physicians and husband who is a physician how I felt, but no one took it seriously. I was very thin as a young person, at 45 I started to gain weight and began menopause. So to everyone including myself it looked like I was gaining and tired from menopause.
It was difficult to become over weight and try different diets and I did try to walk….but I just couldn't do it. I always felt it may have been due to a sugar problem and would ask my Dr. to please do a more thorough sugar test. On my last yearly exam my Dr. ask me why on earth I thought I had a problem as my Basic test show that my sugar is low, therefore I do not have diabetes or pre diabetes.
Two months later at Mayo…I'm told that " low sugar is a marker ". No one in 15 plus years ever suggested I see an endocrinologist.
Even an endo at Mayo who called me with results of my thyroid biopsy told me not to count on that diagnosis and ask me who told me I may have an insulinoma? I never told that physician to protect the other. My Dr back home told me it's so rare I doubt that it's true. To answer your question, I didn't know anything about the pancreas I never dreamed I would leave Mayo Clinic that week with an answer to the symptoms I had for so many years. It was the thyroid nodule and my weight gain that drove me to make an appointment with Mayo. No one ever suggested I go there. I came alone looking for an answer why I have the episodes when I don't eat.

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I'm throwing this out there because I'm wondering if my problems may be due to a neuroendocrine tumor. Had intensive radiation and chemo for cancer 9 years ago. All was fine until 3 years ago when I lost 50 pounds, developed GI issues, then double vision, nystagmus,then balance problems. Exhaustive work ups at Mayo with no malignancy found on imaging or bloodwork. Continue to battle to keep my weight stable-sudden extreme hunger every few hours with anxiety, worsening balance and eye problems if I don't eat. Thirsty and drink water continually.

@sarcomasurvivor

Of course, most of us on Mayo Connect are not medical professionals, just patients like yourself. So we cannot diagnose your problems, we can only share our own experiences.

It sounds like you might have some neurological problems associated with you previous intensive cancer treatment given the balance, double vision, etc. Have you seen a neurologist? For the digestive problems, have you had an upper and lower endoscopy? Most neuroendocrine tumors are found in the digestive tract.

Have you had a consult with an endocrinologist regarding the extreme hunger and weight problem?

I certainly understand your need to find answers. These symptoms sound very distressing as well as inconvenient. I would be interested in learning more about your search for an answer. Will you continue to post as you look for answers?

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