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Adrenocortical carcinoma (ACC) outcomes: What to expect?
Neuroendocrine Tumors (NETs) | Last Active: Feb 11 12:03pm | Replies (23)Comment receiving replies
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.
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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.