PATIENT GUIDE

Your questions

You can already find a lot of answers to your own questions in these three resources

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.

Questions to ask to your medical team BEFORE the surgery

  • How many patients have you treated with this type of cancer? 
  • Does the stage of my cancer affect the options I have for treatment?
  • What other tests do I need to have to confirm my diagnosis and to know if it has spread to any other parts of my body? (e.g., MRI, CT, PET, bone scan, etc.)

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

Questions to ask to your surgeon AFTER your surgery which will help you “evaluate” your case with the precise answers your doctor(s) will give you

  • Is resection total or not? (meaning did the surgeon manage to remove all the tumor)
  • Is it cancerous after a biopsy performed (so after surgery)?
  • What is my level of KI-67?  What does it mean?
  • What is my Weiss score? (Not always available)
  • What is my cancer’s stage? What does that stage mean? How does this affect my treatment options?
  • PET scan to organize after surgery (generally after healing, meaning a few months after surgery)

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).

Questions to ask for your follow up appointments

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.

General:

  1. What cancer do I have? Can you explain it to me in terms that I can understand?
  2. How many patients have you treated with this type of cancer?
  3. Because the stage of my cancer affects the options I have for treatment, what is my cancer’s stage? What does that stage mean? How does this affect my treatment options?
  4. What other tests do I need to have to confirm my diagnosis and to know if it has spread to any other parts of my body? (e.g., MRI, CT, PET, bone scan, etc.)
  5. If possible, in your country (not all countries allow it), you can ask for a comprehensive genomic sequencing (or a “full panel”) test of your cancer (not limiting the testing to genes that have approved treatments). It can help to see if there are any genetic risks for your family.
  6. How much does genomic sequencing (full panel) cost? How long before I get my results?
  7. Will my cancer respond to immunotherapy?

 Treatment:

  1. What is your recommended treatment strategy?
  2. What is the goal of this treatment strategy? Cure, prolong life, or manage symptoms and side effects of the cancer?
  3. What is the 5-year survival rate for the cancer treatment you are recommending?
  4. How effective is the treatment you are suggesting based on the identified drivers of my cancer?
  5. Can you describe the treatment you are proposing? How can I learn more about the treatment?
  6. What risks are there for your recommended treatment strategy?
  7. What are the short-term and long-term side effects of your recommended treatment(s)?
  8. How would this treatment affect my daily activities – work, physical, driving, sleeping, etc.?
  9. What side effects should I look out for and when should I call you if I am experiencing those side effects?
  10. What do I need to do to prepare for, and during, my treatment – exercise, diet, etc.? May I speak to someone from your Integrative/Complementary Medicine Center to discuss helpful options/guidelines?
  11. What tests will you order to know if the treatment is working? When will that take place?
  12. If I have questions during my treatment, whom do I call?
  13. Can you put me in contact with someone you’ve treated with this treatment plan?
  14. What cancer center/academic research center is doing the most research on my type of cancer? Can you refer me to this cancer/research center for a second opinion?
  15. Should that cancer/research center offer a targeted treatment plan or clinical trial that you don’t offer, would you be willing to collaborate with them for follow-up care?

Source: http://pages.surviveit.org/resource-library/21-questions/ 

Other recommendations 

  • Do not hesitate to make your doctor repeat or explain differently if something does not appear clear to you. You should leave your doctor’s office with the answers you wanted and fully understood. We have all been there so don’t be afraid and your doctor will understand!
  • You should keep track of all the information or at least the more relevant data (stage, margins, Ki67, Weiss score, evolution of your mitotane level…)