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Adrenocortical carcinoma (ACC) outcomes: What to expect?

Posted by annern @annern, Jan 12, 2025

I (F 67) was diagnosed with adrenal cortical carcinoma stage 2, Non secreting tumor in September 2024. Treatment of surgical removal, 25 days of radiation and now Chemotherapy with Mitotane (Lysodrin). I am looking for people with this diagnosis to compare side effects. I’m also on Hydrocortisone replacement. If anyone is further down the road than I am, please let me know how you are doing!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Turkey, Volunteer Mentor | @tomrennie | 2 days ago
In reply to @pbouey "Hi, I am a 70 year old woman who had an adrenal tumor removed recently, and..." + (show)
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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

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@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?

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pbouey | @pbouey | 2 days ago
In reply to @tomrennie "@pbouey Hi and welcome to Mayo Connect. I don't know much about Adrenocortical Carcinoma nor Mitotane...." + (show)
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@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?

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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!

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Turkey, Volunteer Mentor | @tomrennie | 23 hours ago
In reply to @pbouey "Thank you so much, I am just learning myself. This is such a rare cancer, finding..." + (show)
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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!

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

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pbouey | @pbouey | 23 hours ago
In reply to @tomrennie "@pbouey You are right. No one ever thinks that they would be a cancer patient. Where..." + (show)
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@pbouey You are right. No one ever thinks that they would be a cancer patient. Where have you been looking for information?

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@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.

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Turkey, Volunteer Mentor | @tomrennie | 22 hours ago
In reply to @pbouey "@tomrennie I have been looking all over the internet, plus I have a close friend who..." + (show)
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@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.

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@pbouey I know it is hard to find ACC information. I just want to caution you to be selective on where you get your information. I have learned that unless the information is coming from a reputable resource, it may not be correct.
I found another discussion on ACC on connect. I hope that you find it helpful.
https://connect.mayoclinic.org/discussion/adrenal-cancer/

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