ACC is an orphan disease and therefore often unknown by general practice doctors or even endocrinologists, so if possible, it is really important to reach out to a specialist of the disease (the leading ones are listed here by country with data to contact them, with their consent, in the “member’s area” of the website).
Please note that a wrong diagnosis or a prior biopsy before the surgery or surgery not performed accordingly, can lead to the proliferation of the cancer and then to a potentially dangerous issue for you.
You need to be followed by an experienced medical team, or what we call a multidisciplinary team (doctors from different fields of expertise – endocrinologist, oncologist, surgeon…)
If needed, because you’re living far away from any expert and not sure that the treatment which is given to you is right, you can always get a second opinion. There is an option provided by the University of Michigan through this form.
CRITICAL: DO NOT ALLOW ANY BIOPSY of your adrenal tumor(s) before surgery. The reason is that the cancerous cells from your tumor can spread through the lymphatic system to other cells. ACC is not a typical cancer and as such, should not be treated the same way as others.
Note that, in the USA, generally, medical insurance companies do not allow PET scans before surgery and wait for authorization based on the confirmation that the tumor removed is cancerous
Note that you will not have all the answers right away. A biopsy and analysis of the mass needs to be undergone to have those answers, but since score of Weiss and Ki 67 are huge factors of your prognosis you will need to have them included in your file at some point (if it possible).
We strongly recommend that you prepare ahead of your appointment. Note all your questions (keep a little notebook which will follow you to all your appointments) but also what you are experiencing (feelings, thoughts, physical symptoms), in order to share with your doctor.