Locating a Physician
Choosing the right doctor is a crucial decision. However, finding doctors experienced in treating adenoid cystic carcinoma (ACC) can be a challenge. In order to help ACC patients make an informed decision in selecting doctors, the Adenoid Cystic Carcinoma Research Foundation (ACCRF) and the Adenoid Cystic Carcinoma Organization International (ACCOI) offer this listing of physicians who have treated ACC patients. The names of physicians included in this listing have been provided by ACC patients. The Physicians List is alphabetized by country or state (if in the United States), then by city, and then by institution. Physicians at each institution are organized by specialty before being alphabetized by last name.
SPECIALTIES: Patients should pay special attention to each physician's specialty (Surgery, Radiation Oncology, Radiology or Medical Oncology). Although each patient's situation is different, the current standard of care for newly-diagnosed ACC patients usually involves surgery followed by radiation. Often, a surgeon will be the first medical professional seen by an ACC patient, with later referrals to radiation oncologists, radiologists and/or medical oncologists. Radiation oncologists may treat tumors that cannot be removed surgically, residual disease after surgery or recurrences. Radiologists may be effective in treating isolated metastases. Medical oncologists may suggest systemic therapy (chemotherapy and/or targeted drugs) if residual disease cannot be surgically removed or the patient has advanced metastatic disease. Ideally, a multi-disciplinary team of all specialties (sometimes referred to as a "tumor board") will review the options and proposed treatment plan for each ACC patient.
The "Subspecialty" column of the listing may be useful for patients with tumors in less common sites or seeking particular treatments. Most patients dealing with primary tumors will seek out a surgeon focused on the head & neck or otolaryngology (ear, nose & throat). However, patients with primary tumors in the trachea or lung metastases may wish to consult with a thoracic surgeon. Other surgery subspecialties may be appropriate for patients with ACC of the vulva (gynecology) or the lacrimal gland (ophthalmology). Among the radiation oncologists and radiologists, the "Subspecialty" column indicates if the physician offers treatments other than standard photon treatment, such as protons, carbon ions, neutrons, stereotactic radiation, radiofrequency ablation (RFA), cryoablation or brachytherapy). Some patients with substantial oral surgery require a prosthodontist; they are not included in this listing, but may be searched for at the following website: http://www.gotoapro.org/find-a-prosthodontist/
If you are comfortable with the physician you have selected, but they are limited in their knowledge of ACC and wiling to learn more, an option is for them is to contact a physician on our list to find out more about this disease. That has become more common for physicians to speak with their peers to increase their knowledge and awareness about a rare disease like ACC. You can also print out a few of the medical papers on our site to give to your doctor which may provide them with a more comprehensive overview of ACC and the more normal treatment options. You can find a list of those documents on our FAQ page.
Here is how to get a second opinion without leaving home.
To view or download the Physician's List in .PDF format using Adobe Reader.
To learn how to obtain a 2nd opinion from a physician without leaving home.
Note: PDF files require a viewer to use so we provide a link for a free download of Adobe Reader.