Adrenocortical carcinoma (ACC) outcomes: What to expect?

yes, I have contrast dye with all my ct scans and to this date I have not had any kidney issues.

@stromnjj Did you have contrast dye with all the CT scans, if you did that may have damaged your kidneys.

My tumor was 3.4 cm when it was discovered by accident. I had no symptoms, so it is called nonfunctioning. My surgery was done in my area hospital by a surgeon who had experience with adrenals, but since they were not sure how to take care of the cancer, I was sent to a hospital two hours from my house. There I see an endocrinologist who has experience with adrenal cancer. I had 28 treatments of radiation and two years of mitotane. My first two years I had ct scans every 3 months, then it went to every 6 months and now I go yearly.

@hopeful33250 Thanks for reaching out. To clarify, while I am "medically lonely" in terms of finding others who've gone through this, and would be pleased to learn and share from others in the group, thank God I surrounded by family and friends and not otherwise lonely. I had NO SYMPTOMS WHATSOEVER, and found the non-functioning tumor incidentally this summer during a CT Scan in connection with a relatively minor medical issue. Initial scans reported a "suspect ACC" 14cm in size, and scans a few days later found one 18cm in size. Being that ACC is so rare, I made an effort to find experts in the area, and discovered the incredible team at the Mayo Clinic. Thank God they successfully resected it - discovering it to be 24cm(!) large, Stage II. The team is caring, skilled, and experts in their field. Being that in addition to ACC's being rare, tumors this size (in living people) are even more rare, to avoid taking chances I expect to start Mitotane soon and am being treated by a specialist - an oncologist who focusses on Neuroendocrine tumors generally and ACC's specifically. Have any of you experienced side effects? How quickly did they start and did you find successful ways to mitigate them?

Hello @delliot and welcome to Mayo Connect. I understand what you mean about feeling lonely when you are experiencing a rare cancer disorder. I'm glad that you found some others on Connect who can share this journey with you.

Share, as you are comfortable, a bit about this journey with ACC. How long ago were you diagnosed? What symptoms led to this diagnosis?

Most of us with a rare cancer have been most successful when we have sought treatment (or at least one consultation) with an oncologist who specializes in our particular type of cancer. Are you being treated by a specialist or are you seeing a general oncologist?

@annern Don’t see many recent posts. When you have a one-in-a-million medical adventure it can be lonely. Just joined the club and had a large ACC resected and have not yet started mitotane; hope you’re doing well and stay strong. Wondering how many others are in the same boat.

My surgery was in August 2024, and I had 25 days of radiation from Sept to October. Hospitalization was rough; I recovered well from the surgery and had minimal side effects from the radiation. My Chemo is an oral medication that I take daily for possibly 2 years, 5 years or the rest of my life. In the meantime, I retired from work, so I am adjusting to a different retirement scenario than I had planned. The Chemo has been titrated to my tolerance, and some days, the side effects are still overwhelming. GI side effects, fatigue, brain fog. I have to plan my days not to overdo things energy-wise. I am trying to build relationships with other women to meet for coffee or lunch. I have hobbies that I am ramping up. I also have put a lot of time into getting onto long-term disability from my former employer and setting up Medicare Health Insurance.
I have worked a remote job for the last 11 years, so I have no local former coworkers with whom I can stay in touch. My spouse continues to work and will not likely retire for 4-5 years. I have local kids and their spouses and grandchildren. I hope to get a part-time job to bring in some cash and an outlet to use my nursing skills and interact with people. I see a therapist every 2-3 weeks, and emotionally am on a roller coaster. I use music and videos for emotional support. My spouse is supportive, but he can't be my only support. I see my oncologist monthly with labs and the endocrine dept every 3 months. CT scans every 3 months. One of my biggest emotional struggles is how rare this cancer is and how little recent research there is on it. (1990s) The Chemo treatment is from the 1960s. I feel like a unicorn; even my oncologist rarely sees this cancer. The 5-year survival rates are 60%, but reoccurrence rates are high, so close surveillance is needed. Has anyone survived longer? How long have you been on Mitotane? I just feel so isolated.

Thanks for the info about the doctors and the studies. I’m going to look into facebook groups. I’m still at the point where it is emotionally challenging to do too much research. The old research from the 1990s is so depressing. And hard to find anything else. Your information gives me a place to look!

Have you consulted with Dr. Jaydira Del Rivero at NIH?
There are only a few true experts in the country who deal with ACC on a regular basis. She and her surgeon Dr. Hernandez have some amazing success stories. He’s often willing to do surgery when other doctors won’t.
Also, I would highly recommend joining one of the Facebook groups. You will get tons of great advice and connect with many others with ACC. There are some new trials and also some people are having luck with different chemos or a keytruda and Lenvima combo. Some of the other experts are Dr. Habra and Campbell in Texas, Dr. Hammer at the Univ of Michigan and there’s Dr. Antonio Fojo at Columbia Presbyterian University in NYC.
I am a 7 year survivor myself. I have had a reoccurrence in my abdomen that I had surgically removed (sadly I had a biopsy before they told me it was ACC) but no other treatments. I never have taken Mitotane.
Highly recommend the Facebook groups as they are a wealth of knowledge! Just look up adrenal cortical carcinoma and you’ll find them.