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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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lcmoffa | @lcmoffa | 15 hours ago

Hi All,

I am a 59 year old woman who was diagnosed with ACC in May. I had a very large tumor fully removed but had some significant complications after surgery. Once I recovered I did 25 days of radiation and I am currently waiting to start Mitotane because my liver was adversely affected by the radiation and some of my enzymes are high. Did anyone else have issues with their liver enzymes after radiation? Just curious. Also I am technically considered stage 3 because of the size of my tumor but no evidence that it has spread anywhere else in my body. I would.love to be able to connect with others who are dealing with this disease. Thank you.

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Turkey, Volunteer Mentor | @tomrennie | Jul 13 5:07pm
In reply to @pbouey "@tomrennie I have been looking all over the internet, plus I have a close friend who..." + (show)
Profile picture for pbouey @pbouey

@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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pbouey | @pbouey | Jul 13 4:10pm
In reply to @tomrennie "@pbouey You are right. No one ever thinks that they would be a cancer patient. Where..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

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

Jump to this post

@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.

REPLY
1 reply
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Mentor
Turkey, Volunteer Mentor | @tomrennie | Jul 13 3:49pm
In reply to @pbouey "Thank you so much, I am just learning myself. This is such a rare cancer, finding..." + (show)
Profile picture for pbouey @pbouey

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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1 reply
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pbouey | @pbouey | Jul 12 12:15pm
In reply to @tomrennie "@pbouey Hi and welcome to Mayo Connect. I don't know much about Adrenocortical Carcinoma nor Mitotane...." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@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?

Jump to this post

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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1 reply
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Turkey, Volunteer Mentor | @tomrennie | Jul 12 9:52am
In reply to @pbouey "Hi, I am a 70 year old woman who had an adrenal tumor removed recently, and..." + (show)
Profile picture for pbouey @pbouey

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

Jump to this post

@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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1 reply
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pbouey | @pbouey | Jul 11 10:37am

Sorry, Mitotane, I am still learning!

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pbouey | @pbouey | Jul 11 10:36am

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

REPLY
1 reply
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fahad | @fahad | May 28 3:27pm
In reply to @delliot "@hopeful33250 Thanks for reaching out. To clarify, while I am "medically lonely" in terms of finding..." + (show)
Profile picture for delliot @delliot

@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?

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@delliot which mitotane tablet doctor has suggested you...as I am getting so much confuse which mitotane tablet is usegsul as lysodren mitotane is very expensive for me...and doctor has operated you with surgery

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fahad | @fahad | May 28 3:13pm

Hii...if u was in stage 2 then why did doctor suggested you radiation...bcoz medical oncology doçtor told me there is no need for radiation only mitotane is required

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