Adrenocortical carcinoma (ACC) outcomes: What to expect?

@tomrennie
I have been looking all over the internet, plus I have a close friend who is a UCSF internal med physician who is watching all of this. The Mitatone phase sounds tricky and kind of horrible, but it might decrease the chances of recurrence.

@pbouey You are right. No one ever thinks that they would be a cancer patient. Where have you been looking for information?

Thank you so much, I am just learning myself. This is such a rare cancer, finding information is sort of hard. Never thought I would be a cancer patient, but I guess everyone says that!

@pbouey Hi and welcome to Mayo Connect. I don't know much about Adrenocortical Carcinoma nor Mitotane. Here are links from Mayo's website with information on ACC and Mitotane.
https://www.mayoclinic.org/diseases-conditions/adrenal-cancer/symptoms-causes/syc-20351026
https://www.mayoclinic.org/drugs-supplements/mitotane-oral-route/description/drg-20064841
This thread has some good input from others with ACC. Did you find anything helpful?

Hi, I am a 70 year old woman who had an adrenal tumor removed recently, and was informed I have ACC and the tumor, although removed, was very aggressive. I am to start the 2 years of Mitatone and am unsure of how this therapy will affect my lifestyle. I just retired and have 7 little grandchildren with whom I have been very involved, but from what I read the drug will compromise me significantly. Looking for comrades who are in this situation! Pamela

@hopeful33250 Thanks for reaching out. To clarify, while I am "medically lonely" in terms of finding others who've gone through this, and would be pleased to learn and share from others in the group, thank God I surrounded by family and friends and not otherwise lonely. I had NO SYMPTOMS WHATSOEVER, and found the non-functioning tumor incidentally this summer during a CT Scan in connection with a relatively minor medical issue. Initial scans reported a "suspect ACC" 14cm in size, and scans a few days later found one 18cm in size. Being that ACC is so rare, I made an effort to find experts in the area, and discovered the incredible team at the Mayo Clinic. Thank God they successfully resected it - discovering it to be 24cm(!) large, Stage II. The team is caring, skilled, and experts in their field. Being that in addition to ACC's being rare, tumors this size (in living people) are even more rare, to avoid taking chances I expect to start Mitotane soon and am being treated by a specialist - an oncologist who focusses on Neuroendocrine tumors generally and ACC's specifically. Have any of you experienced side effects? How quickly did they start and did you find successful ways to mitigate them?

yes, I have contrast dye with all my ct scans and to this date I have not had any kidney issues.