The Adenoid Cystic Carcinoma Research Foundation (ACCRF) is a tax-exempt public charity based in Needham, Massachusetts. Its mission is to accelerate the development of improved therapies and a cure for ACC. ACCRF's activities focus on improving communication and collaboration amongst ACC-focused researchers and clinicians; proactively initiating research projects that drive a coherent Research Agenda; and mobilizing patients in support of research. Funded projects span biobanking, model development, genomics, proteomics, bioinformatics and drug screening -- all with a goal of encouraging clinical trials that will lead to better outcomes for ACC patients. Patient Advocacy Group.
Q: Should I donate my tumor?
A: Each additional tumor donated to research will increase the chances of finding a new therapy to benefit salivary gland tumor patients. Ask your surgeon about tumor donation prior to your scheduled surgery.
Q: What does tumor donation involve?
A: You will be asked to complete the required consent forms prior to tumor donation. Tumor donation is an anonymous. Donating your tumor will not interfere with your treatment.
Q: Is my institution part of the SGTB?
A: Please see the “Satellite Sites” page for an updated list of the current institutions involved with the SGTB.
Q: Am I able to donate my tumor if I am not having surgery at a satellite site?
A: Currently we do not have a procedure for patient tumor donations at sites other than those listed on the Satellite Sites page.
Q: What is Mucoepidermoid Carcinoma (MEC)?
A: Mucoepidermoid Carcinoma is the most common salivary gland cancer, representing 25-35% of all malignancies at these locations. MEC behaves based on tumor grade where Grade I has a generally indolent course while Grades II and III may recur and/or metastasize.
Q: What is Adenoid Cystic Carcinoma (ACC)?
A: Adenoid Cystic Carcinoma is the second most common salivary carcinoma. It comprises 15-23% of all salivary carcinoma. These tumors are characterized by protracted and relentless clinical behavior.
Q: What is Adenocarcinoma (salivary duct carcinoma) (AC)?
A: Adenocarcinoma is a salivary carcinoma characterized by forming glands that mimic breast ductal carcinoma. AC comprises 5-10% of all salivary carcinoma. These tumors are typically high-grade with a high probability of recurrence and/or metastasis.
Q: Who gets salivary gland cancer?
A: Salivary gland cancer can occur at any age. There is a slight trend towards women more commonly affected than men.
Q: What causes salivary gland cancer?
A: The cause of salivary gland cancer is unknown. MEC may be linked to radiation exposure.
Q: How is salivary gland cancer diagnosed?
A: Typically these present as a lump of the parotid gland, submandibular gland, mouth or throat. ACC may also include facial paralysis or numbness. Salivary duct carcinoma (AC) patients more commonly have lymph node metastasis.
A diagnosis is made after a biopsy of the affected tissue(s).
Q: What is the treatment for salivary gland cancer?
A: Currently, the standard practice is complete surgical excision. Depending on the histologic findings, some patients (most high grade tumors) may also undergo post-operative radiation therapy. However, almost 25% of patients develop recurrence and/or metastasis within 5 to 10 years.