Adrenal Cancer: Anyone else have this?

Posted by 1kjewels @1kjewels, Nov 6, 2018

I was diagnosed with Stage 3 Adrenocortical Carcinoma in Feb 2018. March 29 had surgery to remove massive tumor on adrenal glad. Also removed one kidney, spleen, 1/2 pancreas and portion of colon. Had 6 wks of radiation, however next scan showed new growth on both lungs and am currently on Mitotane. Next scan showed growth of spots, but nothing else new. Increased dosage of Mitotane and waiting for next scan in 4 weeks. I am looking for anyone who may has experienced this and found alternative treatment with success. This is a very rare cancer, 1 in 1.7 million odds.

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tomelledge | @tomelledge | Dec 18, 2022

In reply to @colleenyoung "Welcome @bailey02. Read posts and connect with others living with adrenal cancer, like @alanbruce @mentallyill @liz65liz65..." + (show)

I had a 15 cm tumor removed with my right adrenal gland in 2012 in Phoenix. I chose to not take mitotane. Then in 2019 I had ACC again, not recurrent or metastatic according to Mayo and Dr Hammer in Michigan. I had a 2.5 cm tumor removed along with my left adrenal gland in Phoenix. I chose not to take mitotane or radiation. I've been NED since then.

annern | @annern | 2 days ago

In reply to @1kjewels "Is there anyone else out there that has Adrenal Cancer?" + (show)

I don't know if you are still on Mitotane. I just started in November 2024. I am dealing with side effects and isolation..

stromnjj | @stromnjj | 1 day ago

In reply to @annern "I don't know if you are still on Mitotane. I just started in November 2024. I..." + (show)

I have been where you are and you are not alone, it just seems like it, because there are so few of us that have been told we have adrenal cancer. I was diagnosed in August of 2020 and went through two years of mitotane and 28 treatments of radiation. Being on mitotane is not very pleasant and when you have no one that understands what you are going through,it just makes it harder. I was diagnosed with stage 3 cancer at the time and I just had my ct scan on Jan 24th and still clean. You can do this !!!!!!

annern | @annern | 1 day ago

In reply to @stromnjj "I have been where you are and you are not alone, it just seems like it,..." + (show)

Thank you for responding! When I had a different type of cancer 40 years ago, I was able to talk to survivors and didn’t feel so much like a unicorn. With this ACC diagnosis, I feel like an oddity. Glad to hear someone has been on Mitotane and has had 4?years of no evidence of disease. I have my first follow up CT scan on February 13 and am not too anxious. Mitotane is the worst. Literally poison. For the first month or so, I would sit and look at the pills and finally force myself to swallow them. My husband won’t touch my medication boxes as he is afraid of them. What criteria lead to stopping the mitotane? Did you have side effects all of the two years? Thanks for your help! I posted in the group questions to see if there are others out there who have done well.

stromnjj | @stromnjj | 1 day ago

Sorry to hear that you have cancer again. When I was on mitotane, I did the same thing, I would just stare at them. I made it up to 6 pills a day for almost two years, but I was sick the entire time, not sure how much the radiation had to do with that. I was also on prednisone for adrenal insufficiency and because of the mitotane my dosage had to keep being changed to 60 mg. I wanted to stay on mitotane longer, but my blood pressure was extremely low and I had low sodium, so my doctor said no more. How are you feeling?