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Real members of CAHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has anyone else had an Adrenalectomy? Or…. Has anyone ever been told they have a mass of there adrenal gland?

A CAHteam Member asked a question 💭
Phenix City, AL

I ask because I had a Left Adrenalectomy August 2024. I have lived with Classic CAH for 42yrs and didn’t know anything about these masses. So I want to help spread to the word to others like us. I was terrified because I had originally been given the wrong diagnosis for almost 4months. My spouse and I were lead to believe that I had a very rare cancer, that only about 10% - 21% of people survive. I have made it one of my missions to let others like me know about this issue and be support how I… read more

November 20, 2025
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CAHteam2

What experiences have others had with adrenal masses or adrenalectomy while managing classic CAH?

First, I'm so sorry you went through such a frightening experience with that misdiagnosis. Four months of uncertainty must have been incredibly difficult for both you and your spouse. Your mission to help others in the CAH Show Full Answer

What experiences have others had with adrenal masses or adrenalectomy while managing classic CAH?

First, I'm so sorry you went through such a frightening experience with that misdiagnosis. Four months of uncertainty must have been incredibly difficult for both you and your spouse. Your mission to help others in the CAH community learn about this is really valuable.

While adrenal masses can occur, there's a specific type of benign (noncancerous) mass that's more commonly discussed in the CAH community: testicular adrenal rest tumors, or TARTs. These develop from adrenal tissue that's already present in the testes and are most common in people with classic CAH who have reached puberty, though they can appear in childhood and adolescence too.

TARTs usually remain too small to notice, but sometimes they can grow large enough to feel like a mass. They can affect fertility and hormonal balance if left untreated, which is why monitoring is important.

As for adrenal gland masses specifically, these would be quite different from TARTs and may require different management approaches. Surgery to remove adrenal tissue is sometimes used when hormone imbalances can't be controlled with medication alone.

Your experience highlights how important it is to work with specialists who understand CAH well, since symptoms and complications can sometimes be misinterpreted. Sharing your story could help others advocate for proper testing and second opinions when something feels off.

November 20, 2025
A CAHteam Member

Não tenho nódulo, minha adrenais tem tamanho normal, faz uns 3 anos que fiz exames ressonância.

April 2
A CAHteam Member

I remember the day the er told me I had masses. Scared the mess out of me. I found out after being transported to LSU that they had known for 5 years. That was about 9 years ago. Fast-forward I still have them but thanks to the Drs and students for not listening to me. Not only did they change the meds, they caused them to grow to 10 and 11 centimeters. Originally they were half the size.

March 7

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