NET - Insulinoma
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.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I live in Southern California and cannot find a specialist who Is experienced as the condition is so rare
hello and I am glad you are healing after surgery I have a small insulinomaDetected by a pet scan and am looking for a Doctor Who specializes with these types of pancreatic tumor’s -may I ask where you got your diagnosis and treatment?
Hello @preeti
I hope you are feeling stronger now. How are you progressing post-sugery? I was wondering if you have surgery follow-up with Mayo by video conference or do you follow up locally with a physician in your area?
Any problems that you care to share? Or better yet, any successes?
I know, so many questions! Will you post an update?
Hello @ahtaylor
In mid-April, you mentioned that you were going to be starting Victoza for your blood sugar problems and there would be close monitoring. I was wondering if you had started that med yet. If so, is it helping with insulin and glucagon control?
I look forward to hearing from you. Will you post an update when it's convenient for you?
Hi again @preeti
As it has been about a month since your surgery, I just wanted to check in and say hello and see how you are progressing post-sugery.
Will you post an update as you are able?
@ahtaylor Thanks for your reply. I hope the Victoza is a help to you.
Sorry for they delay in response. Getting back and catching up. We are going to try Victoza which is technically a diabetic drug and appears a little counterintuitive but does help with insulin and glucagon control. There will be close monitoring/communication re: effectiveness once I start the medication. The other alternative was diazoxide which has significant side effects. Thanks for the questions.
Hi @preeti
I've been thinking about you and wondering how you are doing. I hope your recovery is still going smoothly.
Will you be returning to Mayo for a post-op appointment or will the follow-up be done by video?
I would enjoy hearing from you when you are able.
@ahtaylor
I so appreciate your update. I feel with you both in the relief of "no metastasis" but I also share with you in your disappointment that there is currently "no fix" for your problem. I applaud your determination as you journey towards a cure and/or treatment.
If you are comfortable sharing more, could I ask what new med you are trying? Is the med being used to alleviate the symptoms of the blood sugar problem?
I have just returned from my week at Mayo so I wanted to post a quick update for the group. The best news of the week is that we confirmed there is NO metastasis of the insulinomas to the liver. The only downside to the week is that the pancreas is still positive for at least one or more insulinoma tumors. After an endoscopic ultrasound the tumors are not visible for the purpose of ablation of the tumors. We met with the surgeon after the endoscopic ultrasound. Essentially we have 3 options: 1) medical management 2) ablation of the tumors via endoscopic ultrasound 3) total pancreatectomy (strongly not recommended). Since the tumors were not visible by EUS, we are really only left with medical management of the remaining tumor(s). A little disappointing there is not a "fix" at the end of all the procedures but I am very happy there is no metastasis. We are going to try and new medication to see if it helps. The journey does continue. . .