Being diagnosed with adenoid cystic carcinoma is life-changing. Your next steps are crucial in achieving the best possible outcome.
Seeking a second or third opinion from afar does not necessarily mean that you need to be treated by that physician. However, it will help make a well-rounded decision when putting your treatment plan together.
Recommendations for seeking a second opinion
Situations where a second opinion may be important
- Your doctor is unfamiliar with ACC – after all, it’s rare!
- You feel uncomfortable with your doctor, the diagnosis or you need confirmation
- The treatment offered has side effects or risks that you find disconcerting
- You’ve been told that your tumor is inoperable
- You’re seeking an opinion from those with additional surgical training (robotic surgery, vascular surgery, reconstructive surgery)
- Your doctor’s treatment goals are different from your own
- Your cancer is not responding to your current treatment
- You just want peace of mind that you’re making the best treatment choice
- Your health insurance requires it
How to find a second or third opinion
- The National Cancer Institute (NCI) has designated a number of cancer centers that meet standards for cancer prevention, clinical trials and research. A Comprehensive Cancer Center (CCC) meets NCI standards in all three of these categories. Many of these physicians can be found on our ACCOI physician list. Valuable resources can also be found by connecting with other patients in our ACCOI online support groups.
- Your current doctor should understand the value of seeking a second opinion, and should not be offended. If they make you feel uncomfortable about this, you may want to reconsider if they’re the right choice for you.
- In most cases, ACC grows very slowly. Usually, you can take some time to explore your options. If you are concerned about waiting for treatment, discuss this with your doctor.
Remote consultations without leaving the home
In many cases, it’s possible to seek a second opinion remotely; sometimes for free. This is especially true if a patient lives in a rural area or an area with minimal resources. Once a medical expert is identified, call their office to find out if they’ll provide remote consultations, at what cost (if any).
It’s important to be able to give the new doctor the exact details of your diagnosis and planned treatment. Make sure you have the following information handy and always keep copies for yourself:
- A copy of your pathology report from any biopsy or surgery
- If you had surgery, a copy of your operative report
- Copies of all your previous scans; mostly likely provided on a CD disk or electronically
- A summary of your doctor’s suggested plan
While your existing medical center may be able to send your records, sometimes but it’s best to take control of this process. You can ask your current doctor’s office for copies of your records. If you have had treatments or tests in a hospital, mostly likely you may need to contact their medical records department. You may also be able to access some records through an online patient portal.
It will be helpful to create a cover letter explaining why you’re seeking another medical opinion along with a brief description of your diagnosis and previous treatments listed in chronological order.
