Adrenal Cancer: Anyone else have this?

Posted by 1kjewels @1kjewels, Nov 6, 2018

I was diagnosed with Stage 3 Adrenocortical Carcinoma in Feb 2018. March 29 had surgery to remove massive tumor on adrenal glad. Also removed one kidney, spleen, 1/2 pancreas and portion of colon. Had 6 wks of radiation, however next scan showed new growth on both lungs and am currently on Mitotane. Next scan showed growth of spots, but nothing else new. Increased dosage of Mitotane and waiting for next scan in 4 weeks. I am looking for anyone who may has experienced this and found alternative treatment with success. This is a very rare cancer, 1 in 1.7 million odds.

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tomelledge | @tomelledge | Dec 18, 2022

In reply to @colleenyoung "Welcome @bailey02. Read posts and connect with others living with adrenal cancer, like @alanbruce @mentallyill @liz65liz65..." + (show)

I had a 15 cm tumor removed with my right adrenal gland in 2012 in Phoenix. I chose to not take mitotane. Then in 2019 I had ACC again, not recurrent or metastatic according to Mayo and Dr Hammer in Michigan. I had a 2.5 cm tumor removed along with my left adrenal gland in Phoenix. I chose not to take mitotane or radiation. I've been NED since then.