Anyone else dealing with adrenocortical carcinoma?

This community welcomes anyone dealing with adrenocortical carcinoma, and connecting with others who understand this rare cancer journey can provide valuable support and shared experiences. The knowledge and encouragement from fellow community members often helps patients feel less isolated when facing this diagnosis.

Yes, my husband has been fighting for 5 years. Right now, he has 4 nodules in his right lung. He had surgery to remove one tumor, and a month later these nodules showed up. We are awaiting scans in March to see if they are big enough to treat with radiation. It’s a battle.

yes I do

Yes me...

I just had surgery. I'm waiting to see if I qualify for a reduced cost for mitotane.

Going since may 2022. 6 surgeries including a gallbladder removal. Chemotherapy and radiation. One surgery included “sloshing’ or shake and bake (hypec). Best care at NIH. Exploring new chemo and will have one more surgery. Coming to the end of the journey, I’ve come to understand cures are rare and I’m alright with that. Just want quality of life and push it as much as I can. No pain just tiredness and fog brain. Can’t see any benefit from mitotane

Thank you, Charles T.! My husband also refused Mitotane, and chose quality of life. He now has 7 nodules in right lung. Only 2 are large enough to treat with Radiation. One day at a time. His battle is 5 years, 3 months now. Getting harder. We wish there was a trial for this cancer or someone who wants to see a cure. 🤷‍♀️

Check with NIH, they are the clearing house for trials. I tried one series of three but didn’t see any results Looking at some others. All there are is “this could helps”

Ok, Thanks. I will tell my husband.

I have it.

How long have you been fighting the battle, Jacqueline c. ?

I’m battling too and I do know I was just up at Nih and they have some new clinical trials. I do a lot of alternative and I now am NED after fighting for four years and I believe it’s the alternative that cured me and surgeries I was tired of listening to everyone telling you what to eat what you should need. Listen to the doctors all that sort of stuff doctors are God and they don’t know with our rare cancers. What to do my Dr is shocked because he didnt think I would still be here four years later. So don’t give up if I followed all what the doctors were trying to get me to do. I’m sure I would not be here. everyone’s path of how they want to do this journey is their own but don’t be afraid to go outside the box of what Drs tell you and no, I did not do mitotain. I didn’t think it was worth killing my other adrenal gland

Sadly, I am informing my support friends that my husband lost his battle with Adrenocortisol Carcinoma on September, 8, 2026. He fought his battle bravely until the very end, his battle lasting 5 years, 8 months, 8 days since diagnosis. For the most part, he had quality of life until June 16th of this year. Scans revealed that his cancer had doubled in size since his March scans. Every day since then was so, so difficult. I miss him so much, but I would not want him to suffer one day longer. I thank you in this group for your support and prayers. My husband is with God and is perfect at last! ❤️. We were married 53 years, 8 months and I will always love him.

Sorry sorry. I’m holding on at 4 1/2 years. Heard of a T-cell treatment at UCLA it’s a trial for adrenal cancer but has been very effective with blood connected cancer