Diagnosis of ACC can be long, complicated and filled with unknowns. It is not unusual to have misdiagnoses before getting an accurate diagnosis since many doctors are unaware of this orphan cancer, especially as it relates to the pediatric population. Diagnosis can happen months or even years after initial signs have surfaced because in most cases, it is so slow growing. Symptoms vary depending on the gland affected and how advanced the cancer has grown.
Getting an Accurate Diagnosis
Guided needle ultrasound or surgical biopsy are typically the methods used to perform a biopsy on the suspicious tissue. The cells and tissue are collected and then sent out for pathology. Once the pathology results come back, a diagnosis is made.
Staging
Staging for ACC is multidimensional. This is a good breakdown of ACC staging and will give you a good idea of staging if your physician does not indicate.
Hearing the Words That Change a Family's Life
A cancer diagnosis of a child impacts the whole family and can be devastating for parents, especially. The feeling of helplessness surrounding your child's well-being can be profound.
A child's diagnosis of ACC has it's own unique stresses for families. Many questions may circle:
• Is this genetic?
• Is this environmental?
• Did we do something wrong?
• Could we have done something differently?
• How will our family manage financially?
• How will our family get the care recommended in another city, state?
• Will we be able to keep working?
• Will we have the help we need to support our family while going through treatment?
• Will the cancer come back?
• I can't find any information about children/teens with ACC. How can I know what to expect or what my child's chances are for a good life?
• Unlike many other cancers, post-positive outcome of treatment, they will have to monitor this diagnosis for their entire life, how will that affect them?
• Will they survive?
• How sick will they get from treatment?
• Will they suffer?
• With extensive facial surgery, will they look the same?
• If they suffer facial changes as a result of invasive surgery, how will it affect their self-esteem?
• Will they be able to go back to school?
• How will their friends react?
• How will it impact our family: siblings, marriage?
• How will it impact their psychological health?
• Will our child ever live a normal life again after treatment?
• How will this impact their siblings?
• They were so healthy before this, what happened?
So many questions. Hopefully throughout this website and with the information and resources that we have gathered, we’ll be able to help you navigate this scary and most difficult journey from our own experiences in the journey of pediatric ACC.
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.