ACCRF - Tumor Donations

Just Diagnosed with ACC?

Patients who are struggling with a new diagnosis have so many issues to face. Here is a brief list of action items worth considering:

1. Focus first on your diagnosis and treatment plan.
Get as comfortable as possible with the medical choices you are making with the assistance of a trusted physician and your support network. Consider seeking a second or third opinion from a physician with experience in treating ACC patients; the ACC Physicians List may help you find an expert close to home. Look through the Frequently Asked Questions (FAQ) page of ACCRF´s website to learn about treatment options as well as suggestions on how to manage living with ACC.

2. Join the free Yahoo Email Information Group
The ACCOI Yahoo Group, moderated by ACCOI, is an excellent resource for ACC patients, families and caregivers who would like more information on their individual situation. A community of more than 800 people offers tips on treatment plans, treatment side effects and much more. Patients can search through prior postings for information or start a discussion on a topic of interest. The information should not substitute for the advice of an experienced physician, but may provide additional perspectives.

3. Consider donating part of your tumor for research if you have an upcoming surgery.
Your tumor donation will bring closer the day when new therapies will benefit ACC patients. It is free, won´t interfere with your treatment, maintains your privacy and is reversible if you should change your mind. The tissue is most valuable if cooled or frozen immediately after surgery, so ask your surgeon about tumor donation and complete the appropriate forms prior to surgery. Otherwise, your tumor is likely to be fixed in paraffin, limiting the types of analyses that may be performed on it. For more information on tumor donations, please click here.

An ACC diagnosis can be devastating. However, many patients have survived and thrived, each in their own way. All, some or none of these steps may help you along in your journey.