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ACC Treatment Options

mhendrix
Posts: 1
Joined: Aug 2009

I'm so grateful to have found this site. This month marks the three-year anniversary since I had radical surgery to remove a rather large adrenocortical carcinoma tumor. I was told by two doctors, one of which is at a cancer center, that there would be no follow-up treatment to kill any hidden cancer cells because ACC didn't respond well to chemo or radiation. So, after surgery removed the tumor (and a few other things!), I've gone for regular CT scans, x-rays and bloodwork, and so far, so good. No evidence of cancer. I was wondering if anyone else had a different experience after surgery to remove the tumor. Is there really no preventative treatment after surgery? I've always wondered and there's so little information out there about it. Any information would be most appreciated. Thanks a bunch! And my blessings to all of you!

ACCfighter
Posts: 2
Joined: Dec 2009

I am so glad that you celebrated your three year mark. I have recently had a tumor removed which was an adrenal cortical carcinoma. It did not appear to have spread to other organs. No other tumors are present in the tests so far. I am beginning my treatment of Mitotane in order to "prevent" the possilbe spread of the very active cells inside the tumor. I will also undergo radiation therapy. Check out the University of Michigan Endocrine Oncology program for more information.
Please post your progress!
Thanks.

Suha
Posts: 2
Joined: Aug 2012

Hi!

My husband also had a large tumor removed. 1.2 kilos. He was also not given any chemo or any medicine. Hope you are doing fine.

Regards
Suha

encbeach
Posts: 1
Joined: Jan 2017

Good Day! Hoping that someone might have some new input/success into ACC treatment options. My wife (a 52 year old RN) had a very large cancerous adrenal tumor removed 12/2013, had radiation treatment then took mitotane for two years before the cancer reappeared and she was diagnosed stage IV. Her oncologist had never treated ACC previously so we were got a 2nd and 3rd option and the consensus was to try a defined ACC chemo cocktail which after 3 months was determined to be ineffective. Currently she is taking OPDIVO which for the time being is keeping the tumor growth minimized. Hoping and praying for a new study to come available in 2017 and if anyone out there has any new information please share.

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