Adrenocortical carcinoma (ACC) outcomes: What to expect?

@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?

@delliot
I appreciate you clarifying about being "medically lonely." I understand how surprising it is to find a rare cancer where there were no symptoms. I've never had any symptoms, but I have had three surgeries for NETs. It is surprising and also lonely.

I'm glad you found such a great medical team at the Mayo Clinic. It was a wise decision to seek consultation and treatment there. Do you live near a Mayo facility, or do you travel?

While I have not had ACC, I hope that you continue to find others to connect with and gain knowledge from their experiences.

Will you continue to post as you progress on this journey?

I hope your surgeries were successful; are you being treated now?

I live nowhere near the Mayo Clinic in Rochester MN where i was treated. However, once i understood that i was dealing with a rare carcinoma type (ACC is around one in a million) I did my homework, narrowed the choice down, and ultimately chose the Mayo Clinic due to its expertise with diagnosing and treating ACC's. Specifically Dr. Bancos and Dr. McKenzie and their teams. They're extremely knowledgable, compassionate, and explain everything. Most doctors never or rarely encounter ACC's. There are only a handful of proper hospitals in the US that specialize in ACC's from a multidisciplenary perspective. Its important to find the right doctor; the approach is a bit difference (e,g. biopsies are dangerous) and full resection, where possible, is essential. I will be starting mitotane soon with prayers to avoid recurrence and considering the range of possible side effects, its a bit daunting. That said, i am only in my fifties, and want to do everything I can do be here for my family for as long as I can. In the meantime, I am getting compliments on having visibly slimmed down a bit after parting with a 5lb tumor. ("Was it Ozempic?" I'm tempted to respond "No, Cancer" but I smile and take the compliment. They mean well.)

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

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

@stromnjj Same. Specifically I get Ga-68 dotatate contrast dye. My monthly bloodwork tests for kidney functions. After about 12 scans over 3 plus years, the kidneys are still good. To my knowledge, there isn't a better test or scan for the neuroendocrine tumors that I have.