Aa
A
A
Close
Avatar universal
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
Cancel
3 Answers
Page 1 of 1
657231 tn?1453836403
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!).
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
657231 tn?1453836403
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.

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Recent Activity
1683365 tn?1305143156
Blank
ChefRachel76 added the Food Diary
Sep 30
Avatar universal
Blank
Kasch010 commented on When Your Cold Is Not...
Sep 28
Avatar universal
Blank
Tuey123 commented on When Your Cold Is Not...
Sep 27
Top Thyroid Answerers
Avatar universal
Blank
MI
657231 tn?1453836403
Blank
Northern, NJ
Adrenal Insufficiency Community Resources