Q. I was just diagnosed with a very rare type of cancer. My oncologist has admitted that he has not treated this type of cancer before, and I feel uncomfortable having him guide my treatment planning. Where can I get additional information about my cancer and typical treatment approaches?
It is understandable that you have questions after receiving your diagnosis. It’s also understandable that you wish to consult with a medical professional who is both familiar with and has experience in treating your type of cancer. Although oncologists, like your doctor, are specially trained to provide medical care to people diagnosed with cancer, many have specific areas of expertise. As you face important treatment decisions, it is important to have vetted information to inform your choices, provided by someone who specializes in your type of cancer.
Many people choose to get a second opinion in the circumstances you describe. A second opinion provides an opportunity to have your diagnosis and projected treatment plan confirmed by another medical professional. These consultations may also offer additional medical information about your diagnosis and additional recommendations or treatment options to consider. Speak with your oncologist about your interest in consulting with a specialist. He may have referrals for you. Otherwise, reach out to an organization associated with treating your type of cancer, academic medical institution, or National Cancer Institute-designated facility. Although your cancer is rare, there may be medical professionals who are familiar with the disease, available to guide you. NCI also offers additional information in their fact sheet How to Find a Doctor or Treatment Facility If You Have Cancer.
CancerCare’s professional oncology social workers are able to answer any additional questions you may have about getting a second opinion. To speak with an oncology social worker, please contact our Hopeline at 800-813-HOPE (4673). CancerCare also has e-booklets and publications on improving communication with your health care team.