hilary1617
First time at the rodeo.
- Joined
- Jan 6, 2014
- Messages
- 3,874
Hi @weaura,
Odds are that you are just fine, and not trying to be a scaremonger, but while the likelihood is lower in insulinoma than other PNETS, and the initial diagnosis was that the tumor was benign, there is a possibility of recurrence (<15%). Recurrence can happen many years down the road due to very slow NET tumor growth. Recurrence frequency is much greater in persons with Multiple Endocrine Neoplasia, which can be associated with insulinoma - have you undergone genetic testing for MEN-1?
Are you under periodic surveillance for increased insulin, 5H1AA, panreastatin, etc. levels? These would be more predictive than blood sugar.
What the old medical journals reflect and what most doctors were taught about NETS is no longer the standard of care. It is important to consult with a NET specialist.
Wishing you the best!
Odds are that you are just fine, and not trying to be a scaremonger, but while the likelihood is lower in insulinoma than other PNETS, and the initial diagnosis was that the tumor was benign, there is a possibility of recurrence (<15%). Recurrence can happen many years down the road due to very slow NET tumor growth. Recurrence frequency is much greater in persons with Multiple Endocrine Neoplasia, which can be associated with insulinoma - have you undergone genetic testing for MEN-1?
Are you under periodic surveillance for increased insulin, 5H1AA, panreastatin, etc. levels? These would be more predictive than blood sugar.
What the old medical journals reflect and what most doctors were taught about NETS is no longer the standard of care. It is important to consult with a NET specialist.
Wishing you the best!
