Rare Tumors: Where to Go When It Seems There Is Nowhere to Turn

Hearing a cancer diagnosis is one of the most traumatic and fearful experiences for patients and their families. Yet 2 of 3 women and 1 of 2 men will hear the words, “You have cancer.” The scariest part of a cancer diagnosis is the unknown: Patients and their families don’t know what their lives will be like; what their family’s life will be like. They don’t know how long they will live, or how they will live.

For patients and their families, a cancer diagnosis starts a new life of overwhelming fear and anxiety: The anxiety of not knowing the best thing to do or where to find information; the anxiety of waiting for test results — has the cancer progressed or recurred? They live in fear of a cancer recurrence and not knowing what to do when a cancer does return or gets worse.

The current US healthcare system is fragmented, with variation and disparity in cancer care and a lack of information and resources for patients. Patients feel lost and hopeless as they try to navigate the system. In a decentralized and complicated healthcare system, patients and their caregivers are burdened with having to figure out how to navigate their care. Are they getting the best treatment? Is what the doctor telling them the best option? Are they getting all the test results they need to make the best treatment decisions? What is the best treatment option for them? How do they even know?

Many patients will do what the first oncologist they see tells them. But what if they had a different oncologist? Would they have had the same treatment? Would they have had a completely different experience? Would they have lived longer? Would they have had a better quality of life?

If patients decide to seek another opinion, how do they go about doing this? How do they get all their medical records organized? And how long will this take? Who do they call? Where do they start?

Cancer Commons is a resource to help navigate the toughest cancers. It assists patients and caregivers to navigate a cancer diagnosis by helping them understand their disease, informs them about additional testing that could provide information about their disease and treatment options, and provides feedback from national experts about treatment options.

Patients can register with Cancer Commons at any stage of their disease. Once a patient registers, they are contacted by a nurse navigator who walks them through the entire process. Patients sign an agreement and consent to allow Cancer Commons access to their medical records and to have their information collected so that it can be used to build a knowledge bank. This will house all medical information, decisions, options, and rationales for making decisions about treatments so that each patient record builds knowledge for the next patient.

A Cancer Commons scientist will review the patient’s medical records and generate tailored options to match the patient’s disease stage, prior treatment, molecular and genetic testing, and geographical and other preferences. The options can include standard-of-care treatments, clinical trials, off-label therapy, expanded access, additional testing, or anything else that is appropriate for the patient or that they had inquired about. Continued communication between the patient and the nurse navigator and/or scientist refines the patient’s goals and preferences as they explore their options. The options are vetted internally and externally through virtual tumor boards, which. These tumor boards consist of a network of national experts including oncologists, radiation oncologists, surgeons, and clinical scientists. They provide feedback and rationale for options and escalate as appropriate. Patients are provided with a report of these options and rationales from the virtual tumor board review to help them make their decision. Patients are then continuously followed as they make their decision and start treatment.