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Adrenal Cancer: Anyone else have this?

Cancer | Last Active: Dec 18, 2022 | Replies (61)

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@tomelledge

Hello. I have had ACC twice. In 2012 I had a 15 cm tumor removed along with my right adrenal gland and then in 2019 I had a much smaller 2.5 cm tumor along with my left adrenal gland removed. The smaller one was high grade though. Mitotane was recommended both times. In 2012 I chose not to take it as it would have impacted my other adrenal gland and I wasn't ready for hydrocortisone. The ACC in 2019 was considered a new occurrence, not a recurrence or metastatic... A doctor at the University of Michigan recommended radiation along with mitotane. For several reasons I chose not to take mitotane and radiation was out due to the damage it would cause to my internal organs. Mitotane was out due to one, the efficacy of mitotane and two, I couldn't risk having an adrenal crisis during Covid. I'm not against others doing what they feel is best for them. Frame of mind is half the battle. Also, I've changed a number of life style choices to see if they make a difference. I've found on my journey with cancer that there is no "right" way for everyone. If you believe what you are doing is going to help you, it probably will. The placebo effect is mind over matter. Also though, if you believe what you are doing probably won't help, then it probably won't or the nocebo effect. Have faith in your choices.

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Replies to "Hello. I have had ACC twice. In 2012 I had a 15 cm tumor removed along..."

Good afternoon @tomelledge Welcome to MayoClinicConnect, a place where members share their experiences of their health journeys and give and get information. But we don’t try to force our opinions on others! I’m so sorry that you ave a second type of adrenal cancer. Did your doctor explain everything about radiation therapy? I think its more pinpoint today so shouldn’t damage your organs.
You sound like you are very calm and accepting of whatever comes..has your doctor explained what the future brings for you?