There is currently no standardized treatment or healthcare protocol for Pediatric ACC. The information here is based on the collective information gathered from within our Pediatric ACC community and should not be used in place of medical advice.
Initial Treatment
What to Typically Expect
The usual course of treatment currently includes:
surgery and / or
radiation - with proton radiation the most commonly recommended type of radiation recommended for pediatric ACC patients.
Surgery and the extent of the surgery may be minimal to extensive depending upon the size/stage of the tumor and if there is nerve or lymph node involvement. Reconstructive surgery, if needed at all, may be performed at the same time as the initial surgery or at a later date.
Radiation therapy, typically recommended in the form of proton radiation for children and teens, may be performed after healing from the initial surgery. The number of radiation treatments given is dependent upon factors that the radiation oncology team will evaluate. A typical course ranges from 25-35 sessions from our collective experience, with at least one session every day, 5 days/week.
Follow-Up + Long-Term Monitoring
Once radiation is complete, typically there will be post-treatment scans (MRI, CT/PET, X-ray) to evaluate the effectiveness of treatment. If there is no additional sign of disease, the physicians will likely schedule follow-up scans for every 3-6 months for the first year post-treatment. After 1 year, the team of physicians will likely suggest follow-up scans every 6 months-year to monitor for re-occurrence and distant metastasis. It is critical to maintain the recommended scan regimen with ACC and not skip any scans as metastasis can occur without any symptoms.
If you are the parent of, or an adult patient originally diagnosed with ACC between the ages of 0-20, please consider taking part in our ACCKT Patient Registry.
For more information, click here.