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Hi All,
I have been diagnosed with Insulinoma and after unsuccessful attempt of locating the tumor with CT scan and Ultrasound Endoscopy, my Endo in NJ referred me to Mayo Rochester. I have an appointment scheduled for next month.
With Covid cases increasing rapidly, I am not feeling comfortable to travel during next month and at the same time, wouldn’t want to lose my appointment slot that I got 2 months back. For those who dealt with Insulinoma or still have it, do you think it’s important to take care of it asap? I am thinking to postpone the appointment towards March/April when hopefully the situation improves.
I am dealing with hypos for past year and a half. Dexcom is helping me to monitor sugar level so I was thinking to delay the Mayo visit for few months and avoid Covid exposure.
I’d really appreciate any advise you can provide. Thank you so much!
Replies to "Hi All, I have been diagnosed with Insulinoma and after unsuccessful attempt of locating the tumor..."
Good morning Preeti,
I have had 2 surgeries to remove a total of 11 insulinomas. Like you, i have at least one other insulinoma that is unable to be located and continue to deal with the hypoglycemia episode. I also wear a dexcom to assist with management. I completely understand your travel concerns and it certainly is a difficult decision to make. My best advice is to make the decision that is right for you - based on the frequency, severity and day-to-day impact of the episodes vs. the risk of exposure to COVID. While i cannot recommend a decision, I can tell you I have been to Mayo twice since March - May and October 2020 - Mayo does a great job of screening and requiring masks as well as safe distancing and i have not had any exposure issues. Due to my surgeries, I do not have a spleen so I am in the high risk category and felt safe with the processes Mayo and the Endocrinology clinic as well as Dr. Vella had in place. We live far enough away from MN we did choose air travel. We flew Delta and I felt comfortable with their precautions they had in place. I wish you the best in your decision as it is no doubt a difficult one. Please don't hesitate to reach out with additional questions or information I might could assist with.
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Hello @preeti and welcome to Mayo Clinic Connect. I'm pleased that you found this patient support network. We are not medical professionals but patients, like yourself, who choose to share our medical experiences with others and offer support. I have personally had three surgeries for NETs. I do not have an insulinoma, my tumors were in the duodenal bulb. It is disconcerting, though, to have some rare form of cancer, no matter where it is located.
I'm sorry to hear of the unsuccessful attempt at locating the tumor. I'm sure your referral to Mayo will be a great help to you. Mayo has some amazing doctors and also amazing diagnostic tools for dealing with NETs.
I would like to invite @marilyn2525 to this discussion. She has had surgeries for this type of NET at Mayo. Perhaps she can lend some of her personal experiences to help you. I would also like to invite @amya and @ahtaylor to offer you some support.
The decision as to whether to travel during this time of COVID is one that only you can make. You have to weigh the benefits as well as the risks of waiting. Perhaps as a method of making this decision, you can ask your current doctor what he/she thinks about the risk of waiting at this time. Also, are your symptoms debilitating to a point that a resolution is important to you?
I look forward to hearing more about your decision-making process and how you are doing. Will you post again?