Patients who are struggling with a new ACC diagnosis have so many issues to face. Here is a brief list of suggestions worth considering based on what has been helpful to others.
1. Find a good doctor to lead your treatment team
Find a physician that you trust as your primary touch point for treating your cancer. This may be an oncologist, but it might be a family physician, otolaryngologist or other medical professional. Ideally, your particular treatment plan will be developed with input from a team that includes surgeons, radiation oncologists and medical oncologists. Having one key doctor can be very helpful in choosing your treatments. Yet at the same time, obtaining second opinions is always a good idea. And good doctors are not offended by this reasonable step. The ACC Physicians List may help you find an ACC expert close to home.
2. Gather a support system
Friends, family, fellow patients and support groups can go a long way in providing you with love, support and emotional help during an upsetting and exhausting period. They also can be integral to gathering information, handling administrative tasks and acting as a sounding board for tough choices.
You may wish to consider joining a peer-to-peer group such as the Yahoo Group that is moderated by our partner organization ACCOI. A community of more than 800 people who have been affected by ACC is there to share insights and ideas, and help answer each other’s questions on treatment plans, side effects and much more. Information from peer-to-peer groups should not substitute for the advice of an experienced physician, but it may provide worthwhile perspectives.
3. Ask informed questions
This site will help you learn about current treatment options, clinical trials and ongoing research so that you can ask informed questions of your medical team. There may not always be one best treatment decision for your doctor to recommend, particularly for patients with rare and under-researched cancers like ACC. So understanding the choices and your own preferences will help get you to the right decision for you.
4. Take good notes
Ask a friend or family member to accompany you to every doctor visit to help take notes and confirm what you heard. Bring a prepared set of questions to ask. And be sure to collect copies of all lab reports, pathology reports, surgical reports, written and digitized scanning results, etc.
You’ll also want to make sure that your files include basic diagnostic information about your ACC:
- Extent of the disease: Where is the primary site and how large is the tumor? Are there distant metastases? Is there lymph node involvement?
- Histology: What is the tumor’s growth pattern (solid, cribriform or tubular)?
- Perineural invasion: Has the tumor infiltrated major nerves?
- Surgical margins: Was the tumor fully resected (taken out)? Were the margins negative (clean)?
5. Help accelerate a cure!
ACCRF is a patient-led effort to find and develop treatments for ACC, and there are many ways you can help!
- Donate part of your tumor for research if you have an upcoming surgery. It is free, won’t interfere with your treatment, maintains your privacy and may bring us all closer to a cure. The tissue is most valuable if cooled or frozen immediately after surgery, so please ask your surgeon about tumor donation and complete the appropriate forms prior to surgery. Thank you for your consideration!
- Consider volunteering, or participating in a special event
- For additional inspiration read some of the stories of our featured champions