Adrenocortical carcinoma (ACC) outcomes: What to expect?

@annern, welcome. I'm tagging a few other members like @1kjewels @tomelledge @liz65liz65 @freitag who have experience with adrenocortical carcinoma (ACC). You may also be interested in this related discussion:

– Adrenal Cancer: Anyone else have this? https://connect.mayoclinic.org/discussion/adrenal-cancer/

Anne, like you've been on a whirlwind of treatment (surgery, radiation and chemo) since September last year. It sounds like you've only now had a chance to catch your breath and wish to connect with others.

How is your recovery from surgery and radiation going? How often will you receive chemotherapy? How are you doing emotionally?

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.

Hello again, I replied to your post last week about mitotane and acc. I just saw what you had posted under Kidney cancer and thought I would get in touch. I too, am a 67 year old female, who had recently retired, for about a year
when i was told I have acc. Not what I had in mind when I retired. When I was diagnosed, the cancer center in my area did not know how to care for me, so we drive two hours to a place that has taken really good care of me. The two years that I was on mitotane were really terrible, I was sick almost every day, my taste was totally changed and I was very weak. I was taken off of mitotane near two years, because I had severe adrenal insufficiency,but not every one will be the same, some people seem to manage well. My husband retired just before we found out and then covid came, so I had to rely on him and other family members, sometimes it could be lonely, I wish I would have found this mayo discussion sooner, If you need to talk I am here

We just found out my 43 yr old son has a 6.7 mm ACC. He is going to be seen at The City of Hope in Duarte, CA.
Any advice or suggestions, recommendations would be greatly appreciated.

I am so sorry to hear about your son. The word cancer is very scary. If you are going on the internet to do research on acc, only use a reputable website,so that you are getting the correct information. Try to find a doctor that has taken care of patients with acc,not many doctors have seen a person with acc, I have to drive two hours from where I live to be seen by a doctor,who has experience with this cancer and try to not let the statistics of 5 year survival frighten you. Your family is in my prayers, please reach out anytime

Thank you for your reply. We did go down the rabbit hole on the internet and found nothing comforting. All very frightening. We are in the process of scheduling a PET SCAN. Again, thank you! Did you have the tumor removed by open surgery or laparoscopic?

When I was diagnosed, I was stage 3 acc and on the internet, it did not look so good for five year survival, but I have gone over four years and no recurrence. I also had a pet scan , do not let them do a biopsy on the tumor if it is cancer, my first doctor did one on me and it should not have been done. Yes I had laparoscopic and it went well.

Was it as large? His is 6.7 mm

Was it as large? His is 6.7 mm. What was your symptoms? Did you have multiple surgeons in the operating room. They are saying it will be 3 specialty surgeons for Kidney, liver and urologist. What type of surgeon removed your tumor? I know you said you had to find a good surgeon 2 hours away. Thank you for replying 🙏🏻

I am very happy you have had no recurrence. That is wonderful. Did you have to go through Chemo and radiation after surgery.
Thank you for your help!
Sheri La Placa