Anyone with an insulinoma have only therapies instead of surgery?

Hello @briea and welcome to the NETs support group on Mayo Clinic Connect. It is so good to meet you. I see that many others in our support group have posted with you and shared their experiences. Connect makes the sharing of experiences so much easier.

I have followed the narrative about your symptoms and coming to a diagnosis. Many of us have traveled this same road. As you mentioned in your first post, "After a Ga-68 dotatate scan (where my tumors lit up like a Christmas tree) and a biopsy (where they discovered they were malignant with a k-67 of 24)." I would highly recommend that you see a NET specialist. Mayo Clinic has some outstanding NET specialists at all three of their locations. If you would like to have a consultation (either virtual or in-person), here is a link that will help you with an appointment. http://mayocl.in/1mtmR63.

If this is not possible, here is a list of NET specialists (world-wide). Perhaps a consultation with one of these doctors would be helpful.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
You are wise to seek the best help available. NETs are a rare form of cancer and are best treated under the supervision of a NET specialist. Often just one consultation, can you put you on the right road and then you can follow-up with your local oncologist.

I would also encourage you to attend the NETs Support Group meeting this evening, via Zoom. You will meet a lot of folks who have traveled this road and are more than happy to share their experiences with you. Here is the link to register (so that you can obtain the Zoom link),
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
How are you feeling now? What is the most difficult symptom you are experiencing?

Thank you!

I was going to attend the zoom last night but ended up being in traffic and couldn't download the zoom app on my phone in time for the meeting . Will there be other ones so I can sign up for them and get a reminder in time?

My biggest symptom now is mainly just the low blood sugar, although I've gotten better at controlling that. I have 3 little kids so the fatigue and constantly having to make sure I'm all good (as far as having food, medicine, snacks, juice etc) before has been the biggest adjustment, but I know that is microscopic compared to what's going to happen to me.

I just started Everolimus a few days ago, so it hasn't really been long enough for any symptoms yet.

I guess I was just surprised because, other than the blood sugar stuff, I've felt fine and every doctor I went to before with my symptoms since it all started (8/22) kept telling me how rare an insulinoma was, BUT if that was the problem it definitely wouldn't be malignant because that is even MORE rare (I have no family history of cancer or really any big diseases as long as you don't smoke) and if they found it I could just get the surgery and be done and cured forever.

Then suddenly, after the 72 hour fast (I lasted 1 hour 5 minutes before tanking to 37 blood sugar level) everything went so fast I didn't actually meet or talk with anyone too much, just kept getting referred to different doctors through MyChart messages and appointments who sent me to different places and people and to the tests until finally, (on my daughter's birthday in June) I saw I had a message of my new doctor who was an oncologist so I was very surprised!

Then I met with him but was so overwhelmed with everything because I went from "don't worry about it, even if it is the rare insulinoma we'll just get it out and you'll be cured" to "metastatic G3 pancreatic insulinoma to liver" that is "non-curative" and the treatment is to "prolong life", and then he set me up with a prescription for Afinitor, but went on vacation the next day.

After I got home I thought of a million questions (mainly about why the Everolimus treatment instead of the others, especially getting surgery because it's apparently well-differentiated) and sent him a message, but I only got a response from his assistant who just said that it's worked for his other patients, without answering my specific questions.

My new doctor is a specialist at MD Anderson in Houston so I know he must be good, but it was just overwhelming and it's so hard to research and talk to people because of so many responsibilities and decisions that I can't seem to know enough about to triage correctly.

I just need to get organized because I want to know as much as possible as fast as possible before it gets too late to maybe choose a different treatment.

Sorry for the long answer and thank you for reaching out.

Hello @briea and welcome to the NETs support group on Mayo Clinic Connect. It is so good to meet you. I see that many others in our support group have posted with you and shared their experiences. Connect makes the sharing of experiences so much easier.

I have followed the narrative about your symptoms and coming to a diagnosis. Many of us have traveled this same road. As you mentioned in your first post, "After a Ga-68 dotatate scan (where my tumors lit up like a Christmas tree) and a biopsy (where they discovered they were malignant with a k-67 of 24)." I would highly recommend that you see a NET specialist. Mayo Clinic has some outstanding NET specialists at all three of their locations. If you would like to have a consultation (either virtual or in-person), here is a link that will help you with an appointment. http://mayocl.in/1mtmR63.

If this is not possible, here is a list of NET specialists (world-wide). Perhaps a consultation with one of these doctors would be helpful.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
You are wise to seek the best help available. NETs are a rare form of cancer and are best treated under the supervision of a NET specialist. Often just one consultation, can you put you on the right road and then you can follow-up with your local oncologist.

I would also encourage you to attend the NETs Support Group meeting this evening, via Zoom. You will meet a lot of folks who have traveled this road and are more than happy to share their experiences with you. Here is the link to register (so that you can obtain the Zoom link),
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
How are you feeling now? What is the most difficult symptom you are experiencing?

After a lot of tests, scans and different doctors over the course of the last year, I recently got diagnosed with malignant insulinoma in the pancreas that has metastasized to the liver and probably the lymph nodes. It is a well differentiated G3 pancreatic NET insulinoma. The last post here I could find similar to mine (but I am new in trying to navigate this site so I could have missed a lot) was from the beginning of the year so I didn't know if people are still keeping up with that.

I had a Dotatate PET scan in June with biopsies. The main tumor is in the uncinate region of the pancreas with a Ki-67 of 15% but 24% in foci. I have "numerous hyper enhancing observations" all under 2 cm in my liver that my doctor says are too numerable to operate on, but also are "low-volume metastases". I also have "multiple enlarged lymph nodes" that indicate their involvement. I also noticed in my notes it says I have "peritoneal stranding" which he never mentioned at all, but after research seems like that's more bad cancer. I've had lots of blood work, but I have no idea what is important to look at or for because none of those results have been discussed with me and I haven't asked yet in person, but I'm really trying to put it all together.

I got referred to a NET specialist at MD Anderson in Houston a few weeks ago who lightly discussed a few therapies for me, but then strongly suggested chemotherapy and started me on Everolimus that I have currently been on for about 2 weeks. I also take dexamethasone mouthwash.

From my endocrinologist, I also take 3 daily short acting octreotide shots (my doctor was worried about the long acting one because when I take my shots my blood sugar goes down before it goes back up) and 2 daily diazoxide "servings" plus diet to help regulate my blood sugar. It is a constant battle to keep my numbers from going hypoglycemic. I have passed out a few times from low blood sugar, but luckily my family was there to give me an emergency inhaler thing and it's been a few months since that happened last. He also recently put me on Lipitor.

I was overwhelmed with the diagnosis because all the previous doctors (before MD Anderson) acted and said that it probably wasn't an insulinoma, but that if it WAS then it almost definitely was benign because they usually are. Then suddenly I saw a referral to an oncologist on my MyChart so I knew it was bad.

Because of this I probably didn't ask enough questions. I am going back for a follow-up next week and I now have a better idea of what I have and I have questions in a notebook to ask at my visit. I have only seen my NET specialist doctor one time and the rest of my questions (I send online messages because I have to travel fairly far to visit in person) that I asked have been answered by various assistants, nurses and other people on my "team". The visit with my actual doctor was short and seemed more of an introduction. I went in not knowing what was going on, but knowing what an oncologist does, to being overwhelmed with all this information and then the last thing he said was that it was non-curative and that my goal was life prolongation with quality. After reading more, I do realize there is no cure, but it was all new to me then so I admit I was definitely overwhelmed.

But in doing research I saw that many people had different therapies than I do, especially when it comes to getting surgery in removing the main tumor if it's well-differentiated, so I was wondering if anyone else has an insulinoma and what their treatments are/were?

I also found, on another place/site, that many people were disappointed with my SPECIFIC doctor for not being as thorough or aggressive in fighting this disease as they wanted. However, I don't feel like I have enough information or understanding to directly question anything.

I'm wondering if I should get a second opinion on things or if I should send my information to other places? I don't even know how I would go about doing this either.

All this is new to me. I went from not liking to even take Tylenol for headaches and only going to the hospital to have my babies to taking all these medications and scans that, even though I really try and research and read about, are hard for me to understand. But I am determined to be as knowledgeable as possible and become my own advocate for care. I have 3 young children and I definitely want to fight this as aggressively as possible. I keep a journal for questions to ask when I see him now, I'm going to take a friend with me next time so there's someone else there to listen and, if possible, I'm going to record everything. I've also started organizing my notes, test results, and other doctors and places names, different informative sites etc to try and get a better hold of all this new information. I joined some Facebook groups and have started watching some YouTube events with doctors dealing with NETs, and some videos from the Carcinoid Cancer Foundation.

I guess I'm trying to connect with others with similar situations as I have and see if I'm doing the right thing?

Thank you for reading this novel and for offering any help or information or just anything really.

After a lot of tests, scans and different doctors over the course of the last year, I recently got diagnosed with malignant insulinoma in the pancreas that has metastasized to the liver and probably the lymph nodes. It is a well differentiated G3 pancreatic NET insulinoma. The last post here I could find similar to mine (but I am new in trying to navigate this site so I could have missed a lot) was from the beginning of the year so I didn't know if people are still keeping up with that.

I had a Dotatate PET scan in June with biopsies. The main tumor is in the uncinate region of the pancreas with a Ki-67 of 15% but 24% in foci. I have "numerous hyper enhancing observations" all under 2 cm in my liver that my doctor says are too numerable to operate on, but also are "low-volume metastases". I also have "multiple enlarged lymph nodes" that indicate their involvement. I also noticed in my notes it says I have "peritoneal stranding" which he never mentioned at all, but after research seems like that's more bad cancer. I've had lots of blood work, but I have no idea what is important to look at or for because none of those results have been discussed with me and I haven't asked yet in person, but I'm really trying to put it all together.

I got referred to a NET specialist at MD Anderson in Houston a few weeks ago who lightly discussed a few therapies for me, but then strongly suggested chemotherapy and started me on Everolimus that I have currently been on for about 2 weeks. I also take dexamethasone mouthwash.

From my endocrinologist, I also take 3 daily short acting octreotide shots (my doctor was worried about the long acting one because when I take my shots my blood sugar goes down before it goes back up) and 2 daily diazoxide "servings" plus diet to help regulate my blood sugar. It is a constant battle to keep my numbers from going hypoglycemic. I have passed out a few times from low blood sugar, but luckily my family was there to give me an emergency inhaler thing and it's been a few months since that happened last. He also recently put me on Lipitor.

I was overwhelmed with the diagnosis because all the previous doctors (before MD Anderson) acted and said that it probably wasn't an insulinoma, but that if it WAS then it almost definitely was benign because they usually are. Then suddenly I saw a referral to an oncologist on my MyChart so I knew it was bad.

Because of this I probably didn't ask enough questions. I am going back for a follow-up next week and I now have a better idea of what I have and I have questions in a notebook to ask at my visit. I have only seen my NET specialist doctor one time and the rest of my questions (I send online messages because I have to travel fairly far to visit in person) that I asked have been answered by various assistants, nurses and other people on my "team". The visit with my actual doctor was short and seemed more of an introduction. I went in not knowing what was going on, but knowing what an oncologist does, to being overwhelmed with all this information and then the last thing he said was that it was non-curative and that my goal was life prolongation with quality. After reading more, I do realize there is no cure, but it was all new to me then so I admit I was definitely overwhelmed.

But in doing research I saw that many people had different therapies than I do, especially when it comes to getting surgery in removing the main tumor if it's well-differentiated, so I was wondering if anyone else has an insulinoma and what their treatments are/were?

I also found, on another place/site, that many people were disappointed with my SPECIFIC doctor for not being as thorough or aggressive in fighting this disease as they wanted. However, I don't feel like I have enough information or understanding to directly question anything.

I'm wondering if I should get a second opinion on things or if I should send my information to other places? I don't even know how I would go about doing this either.

All this is new to me. I went from not liking to even take Tylenol for headaches and only going to the hospital to have my babies to taking all these medications and scans that, even though I really try and research and read about, are hard for me to understand. But I am determined to be as knowledgeable as possible and become my own advocate for care. I have 3 young children and I definitely want to fight this as aggressively as possible. I keep a journal for questions to ask when I see him now, I'm going to take a friend with me next time so there's someone else there to listen and, if possible, I'm going to record everything. I've also started organizing my notes, test results, and other doctors and places names, different informative sites etc to try and get a better hold of all this new information. I joined some Facebook groups and have started watching some YouTube events with doctors dealing with NETs, and some videos from the Carcinoid Cancer Foundation.

I guess I'm trying to connect with others with similar situations as I have and see if I'm doing the right thing?

Thank you for reading this novel and for offering any help or information or just anything really.

After a lot of tests, scans and different doctors over the course of the last year, I recently got diagnosed with malignant insulinoma in the pancreas that has metastasized to the liver and probably the lymph nodes. It is a well differentiated G3 pancreatic NET insulinoma. The last post here I could find similar to mine (but I am new in trying to navigate this site so I could have missed a lot) was from the beginning of the year so I didn't know if people are still keeping up with that.

I had a Dotatate PET scan in June with biopsies. The main tumor is in the uncinate region of the pancreas with a Ki-67 of 15% but 24% in foci. I have "numerous hyper enhancing observations" all under 2 cm in my liver that my doctor says are too numerable to operate on, but also are "low-volume metastases". I also have "multiple enlarged lymph nodes" that indicate their involvement. I also noticed in my notes it says I have "peritoneal stranding" which he never mentioned at all, but after research seems like that's more bad cancer. I've had lots of blood work, but I have no idea what is important to look at or for because none of those results have been discussed with me and I haven't asked yet in person, but I'm really trying to put it all together.

I got referred to a NET specialist at MD Anderson in Houston a few weeks ago who lightly discussed a few therapies for me, but then strongly suggested chemotherapy and started me on Everolimus that I have currently been on for about 2 weeks. I also take dexamethasone mouthwash.

From my endocrinologist, I also take 3 daily short acting octreotide shots (my doctor was worried about the long acting one because when I take my shots my blood sugar goes down before it goes back up) and 2 daily diazoxide "servings" plus diet to help regulate my blood sugar. It is a constant battle to keep my numbers from going hypoglycemic. I have passed out a few times from low blood sugar, but luckily my family was there to give me an emergency inhaler thing and it's been a few months since that happened last. He also recently put me on Lipitor.

I was overwhelmed with the diagnosis because all the previous doctors (before MD Anderson) acted and said that it probably wasn't an insulinoma, but that if it WAS then it almost definitely was benign because they usually are. Then suddenly I saw a referral to an oncologist on my MyChart so I knew it was bad.

Because of this I probably didn't ask enough questions. I am going back for a follow-up next week and I now have a better idea of what I have and I have questions in a notebook to ask at my visit. I have only seen my NET specialist doctor one time and the rest of my questions (I send online messages because I have to travel fairly far to visit in person) that I asked have been answered by various assistants, nurses and other people on my "team". The visit with my actual doctor was short and seemed more of an introduction. I went in not knowing what was going on, but knowing what an oncologist does, to being overwhelmed with all this information and then the last thing he said was that it was non-curative and that my goal was life prolongation with quality. After reading more, I do realize there is no cure, but it was all new to me then so I admit I was definitely overwhelmed.

But in doing research I saw that many people had different therapies than I do, especially when it comes to getting surgery in removing the main tumor if it's well-differentiated, so I was wondering if anyone else has an insulinoma and what their treatments are/were?

I also found, on another place/site, that many people were disappointed with my SPECIFIC doctor for not being as thorough or aggressive in fighting this disease as they wanted. However, I don't feel like I have enough information or understanding to directly question anything.

I'm wondering if I should get a second opinion on things or if I should send my information to other places? I don't even know how I would go about doing this either.

All this is new to me. I went from not liking to even take Tylenol for headaches and only going to the hospital to have my babies to taking all these medications and scans that, even though I really try and research and read about, are hard for me to understand. But I am determined to be as knowledgeable as possible and become my own advocate for care. I have 3 young children and I definitely want to fight this as aggressively as possible. I keep a journal for questions to ask when I see him now, I'm going to take a friend with me next time so there's someone else there to listen and, if possible, I'm going to record everything. I've also started organizing my notes, test results, and other doctors and places names, different informative sites etc to try and get a better hold of all this new information. I joined some Facebook groups and have started watching some YouTube events with doctors dealing with NETs, and some videos from the Carcinoid Cancer Foundation.

I guess I'm trying to connect with others with similar situations as I have and see if I'm doing the right thing?

Thank you for reading this novel and for offering any help or information or just anything really.

Good morning,
My NET is Pancreas to Liver also to numerous to operate, some were over 10 centimeters. My first reaction was the same, let’s cut it out now and get it over with, but apparently it’s in our blood stream too so non surgical therapies are the only option for me and sounds like you.
Mine was found accidentally during surgery for a hernia, no symptoms. My original prognosis was 6 months, that was last April. After 3 hospitals and several doctors I’m at Dana Farber in Boston.
They immediately started me on chemotherapy, FlowFox 5FU for 6 months and a once a month shot of Octreotide. It worked. In the sense that at this point we are all buying time. The chemo isn’t fun, I didn’t get sick but had trouble eating. Everything had a metallic taste also had Neuropathy in my hands and feet.
In June my symptoms started to return, low blood sugar, Tumors on my Liver that were reduced to 4 cm were back to 10cm, but not all came back.
Now I’m on chemo pills, CapTem and octreotide and feeling better. I can tell it’s working sugers are normal.
The tumors on your liver may be why yours sugers are low, it was in my case. Try mixing cornstarch in your food. I mixed it with chocolate pudding and you can’t really taste it. Not a cure but it helps to stabilize your blood sugar.
Make sure your doctor is a NET specialist if not move on to someone else. It is shocking how little some doctors know about NET. I had a doctor in a world renowned hospital tell me last summer “don’t worry, liver failure is painless”. Would you like to participate in an end of life study? I won’t repeat what I said but I’m not ready to start digging the hole yet!
That’s when I literally crossed the street in Boston and went to Dana Farber.
Scans are an important component too. MRI’s will be more accurate than other imaging.
That’s all I can think of right now, that’s the broad strokes of my experience so far. Stay positive and keep fighting. Also important to remember that we all have different NET’s in different stages and types. What treatment works for one person my not work for others.
Good luck and best wishes

I had 2 MRIs over a 2 year period - last one in Nov 2022. They were both negative. I had an endoscopy EUS ultrasound done in Jul 2023. It showed up positive for a NET. They did a biopsy from the ultrasound procedure and it showed up Stage1 NET. I just had a PET scan done last week and it showed negative for metastatic. For me, the ultrasound found it were the MRIs did not.

That’s good news. Sounds like it was caught early. Like I said we all have different types of NET’s in different stages.
I’m considered stage 4 or stage 3. It seems different Doctors use different terms.
I get MRI’s and CT scans every 3 months for the last 18 months.
Having read these posts for awhile now have been encouraged buy others that have lived for years with NET.