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Adrenal Insufficiency Community
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post op adrenalectomy confusion


Hi from Atlanta GA. Just found the group in my search for information following the adrenalectomy my wife recently had - had her left adrenal gland and tumor removed.  Had a 8.4 cm tumor removed with adrenal - pathology suggested Adrenal Cortical Carcinoma (ACC) - a so-called "ultra rare cancer".  so rare that oncologist has sent pathology off the Nat'l Institutes of Health for analysis and recommendations.

hoping this forum might weigh in with ideas and resources and guidance..

neither the surgeon nor oncologist have done any tests to see if remaining adrenal is taking up the slack - we're trying to get into an endocrinologist in a couple of weeks but concerned we need to be doing more - simply not sure what??  not even sure what questions we should be asking or exploring??

not sure what directions to go in for ACC??? So rare that no established protocols for treatment exist??

any and all input would be great - thanks in advance and so glad I found the site
3 Responses
Avatar universal
COMMUNITY LEADER
I would think she would need an ACTH stim test at some point. Is she on replacement steroids for now?

I would also think sodium and potassium testing would tell you a lot. Sodium and potassium go off in case of a crisis, so those would be monitored. If she craves salt, she should go for it. Any nausea or low BP, the doctor should be called and she should probably head to the ER for support. I have an emergency kit and a medic alert bracelet. Not sure what your doc thinks you need.

It may be that the remaining adrenal was over-working to pick up the slack, or that both were not working due to the pituitary spawning the tumor (that has happened!).
Avatar universal
thanks for the input - we are seeing nephrologist today to review blood test and check potassium and sodium.  establishing an endocrinologist relationship in a couple of weeks to start a better monitoring of cortisol etc etc - thanks for the heads up re the stim test.  not on replacement at the moment - neither the surgeon, nephrologist, nor oncologist even mentioned it - all 3 were confident that remaining adrenal would take up the slack - my little bit a research suggests that is not always the case - and, the team st NIH suggested endo as well - so many things to learn in a short period of time

thanks again for the help
Avatar universal
COMMUNITY LEADER
If she is a already a few weeks out and not on replacements, then she should be fine (although the odd Na and K was a sign that all was not quite, the other adrenal was struggling a bit to catch up).

If she is stressed, make sure she keeps up on some K (potassium) so she does not drop out into a crisis.

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