Adrenocortical carcinoma (ACC) outcomes: What to expect?

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.

Thank you for your response and congratulations on getting past several years after diagnosis. You are the second person who has mentioned to me taking Mitotane for just two years. My oncologist was vague about the length of time I would need to take it. 2 years, 5 years , or possibly the rest of my life. I’m starting my 4 th month and so low on energy. The replacement hydrocortisone has such a roller coaster effect on me. I am adjusting to GI side effects. It is good to hear that other people are able to stop the chemotherapy after two years. Do you still need to take replacement hydrocortisone or does the adrenal gland start producing cortisone again? It is hard to tell if my lack of energy is due to the Mitotane or the replacement cortisone. Another question is have you ever heard of slow release cortisone that would avoid the peaks and valleys of taking the replacement three times a day? Thanks for any information. I have my first CT scan next week.

I wanted to stay on mitotane longer, but the side effects were terrible. I was actually afraid to go off of it, because I didn't want my cancer to comeback, but my body could not handle the drug. I was very weak , losing weight and terrible brain fog. I still take prednisone and probably will for the rest of my life, I was on a higher dose, but now I take 5mg daily. No I have never heard of slow released cortisone. Praying for good news on your ct scan.

I was scheduled for an incisional hernia repair and removing the adrenal tumor and gland was just a preventative surgery as no one thought it was cancer. I was told 95% sure it was not cancer. It had been present on CT scans for over 4 years and only recently had started growing. So the general surgeon opened my abdominal, then the endocrine surgeon took out the right adrenal gland and then the general surgeon came back and repaired my hernia and closed my abdominal wall. 6 plus hours total. Everything I read said that a biopsy should not be done as this is a way that the tumor cells can be spread. I’m not sure why a urologist would be in the surgery. An Endocrinologist surgeon is more specific to this surgery. A kidney surgeon might help if the tumor has spread to the kidney but not sure if needed. Same with the liver doctor. Not sure why needed unless there is already spread. How do you know that your son has ACC? I had no symptoms and the CT scans can’t tell you if it is cancerous or not. Treatment is surgical removal, radiation therapy for 5 to 6 weeks and then chemotherapy with a drug called Mitotane(Lysodren) which has 85% rate of nausea, vomiting and diarrhea. The treatment dosage is increased as far as the patient can tolerate. And the length of time varies. Years. It is a pill that you take three times a day. I’m on month 4 and struggling with side effects. Have to take anti diarrhea meds sometimes and nausea meds. I’m also developing cataract fairly rapidly according to my eye Dr. some people require replacement of adrenal hormones such as cortisol, testosterone and blood pressure meds to maintain a normal blood pressure. I’m seeing my oncologist every month for lab and getting a CT scan every 3 months and seeing the endocrinologist every three months.
My hospital stay was a week after surgery because I had other things done. I didn’t know I had ACC until the lab report came back three weeks later. If the surgery is done laparoscopic then it shouldn’t be a long hospital stay. I had a month to recover from surgery before radiation started and then the chemo started when radiation was done. I looked up national standards of care for ACC so I was satisfied that my treatment met the USA and European standards of care. ACC is one in 1.7 to 2 million , so really rare and not much current research on it. If your son is employed then get short term disability started when he has surgery. FMLA if he qualifies. I’m able to move to long term disability because of chemotherapy side effects, but some people are able to work and just take off some time for the surgery and radiation appointments. 5 to 6 weeks of Monday to Friday treatments that last about 15 minutes from when you arrive till you are out the door. The actual radiation is about 2 minutes a treatment. If you have more questions please ask, I am happy to share my experiences.

I heard that there are European drug trials on the steroids to see if they can make a slow release pill that has two peaks, one in the AM, and then more steady during the day. I understand why you would be afraid to stop the Mitotane and at the same time no longer want to be on it due to side effects. Thanks for your input!

Look at the National Comprehensive cancer Network to find national standards of care.

I was taken of the mitotane by my endocrinologist because I went in to adrenal crisis and was in the hospital for 3 days with low sodium and low blood pressure. It is to bad that to treat adrenal cancer we have to take a drug that is from the 1970

I was stunned when I read the prescribing instructions for Mitotane and saw how old it was! No better treatment in 50 plus years! Just underscores how rare this cancer is, and why we feel so isolated. The oncologist gave me research from the late 1990s to review! As a RN I just was shocked about how little information there is available. I did research the national comprehensive cancer standards which still show Mitotane as the treatment recommended.

I got started on hydrocortisone within a week of starting Mitotane. This is to prevent what happened to you! Did you not get replacement cortisol started when you started Mitotane? That would be a big mistake on the part of your oncologist and endocrinologist. Some people also need testosterone and florinef to replace missing blood pressure hormones made by the adrenal gland and suppressed by Mitotane.

My tumor was 4.2 centimeters at its largest dimension. Since it was under 5 centimeters then it was staged as stage 2. Are you sure about millimeters or do you mean centimeters?