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.