FAQs About Cancer Commons Patient Services

Overview of Our Services

Q: What services does Cancer Commons provide?

A: Our primary goal is to help you or your loved one identify and access your best-possible treatment. While corresponding with us, you may receive:

  • Information about treatment options and treatment expectations
  • A curated list of clinical trials that are most relevant for you or your loved one
  • Information about molecular testing services that could help guide your or your loved one’s treatment
  • Information about second/additional opinions, including remote second opinions
  • A list of cancer type-specific experts, center-of-excellence/high-volume clinics, and National Cancer Institute-designated Cancer Centers
  • Insights from cancer experts serving on virtual tumor boards (see below for more information on tumor boards)
  • Information on supportive care and management of symptoms and side effects

Q: What does Cancer Commons provide that I cannot find anywhere else?

A:  Cancer Commons provides you with free, one-on-one support from a PhD scientist who is dedicated to understanding every detail of your or your loved one’s specific case, and using that information to provide you with up-to-date, evidence-based information personally tailored to you and your goals. This service is delivered with clarity and compassion, without any conflicts of interest. We learn from every patient we serve, meaning that, by using our services, you have the opportunity to help many more patients who come after you.

Q: Which cancer types does Cancer Commons address?

A:  Many people have come to us for guidance on all of the common types of cancer, especially breast, lung, skin, colorectal, and prostate cancers. We also have a special focus on brain, ovarian, and pancreatic cancers, and we have provided guidance to many people dealing with uncommon types of cancer.

Q: How does Cancer Commons communicate with patients and caregivers?

A: We communicate with patients and caregivers primarily through email, since it is best for capturing information. Phone calls or personal meetings are sometimes scheduled, as appropriate.

Q: What happens after I sign up?

A. After you register, a Cancer Commons nurse navigator will email you. You will be asked about your treatment goals and to provide relevant medical records that will help our team understand your diagnosis, treatment history, and other pertinent information. You will also be asked to sign two documents: A Patient Participation Agreement, so we can review and request all medical records on your behalf, and a Patient Consent document that allows us to track your progress over time. Coordinating what we learn from all patients is our unique strength. It enables us to identify the treatments that are working best for patients like you.

The nurse navigator will match you with one of our PhD scientists, who will communicate directly with you and who will research all therapeutic options available for you. Your Cancer Commons scientist will compile the best options into an easy-to-understand report that you can discuss with your oncologist. The final decision regarding tests and treatments is always up to you and your care team. If necessary, we will help facilitate access to the desired tests and treatments.

Q: What information does Cancer Commons collect about my situation and treatment goals?

A: We ask you to provide all relevant medical records, including clinic notes, scans, diagnostic reports, prior treatment records, ability to travel, and related facts that may inform your or your loved one’s treatment options and decisions. We ask questions to understand what you are truly looking for. We seek to understand your personal preferences regarding a “cure” at any cost, extension of life duration, cost-versus-care tradeoffs, quality of life, and concerns about adverse side effects.

Q: What qualifications does my Cancer Commons scientist have?

A: Each of our Cancer Commons scientists is a PhD-level oncology expert committed to keeping abreast of the most cutting-edge cancer research, tests, and treatments available—and how to access them. Their backgrounds in molecular and clinical research enable them to quickly and keenly scrutinize the current cancer landscape and home in on important information for you to consider when making decisions for yourself or your loved one. They understand their own limits and know when to consult other experts for deeper insights.

Q: How much do Cancer Commons’ services cost?

A: Our services are free for all patients and caregivers, and are supported entirely by philanthropy.

Q: Why is my cancer type not listed?

A: We are currently working to add more cancer types to our New Research and Perspectives. However, our expert team is fully equipped to help anyone with any kind of cancer identify and access their best-possible treatment. Please do not hesitate to contact us for a free Treatment Options Report, no matter what kind of cancer you or your loved one may have

Q: Does Cancer Commons coordinate with my doctor?

A: In most cases, we only communicate directly with patients or caregivers. However, we encourage you to discuss anything you learn from us with your oncologist. Final decisions about treatment, tests, and other aspects of care are always up to you and your care team. In limited cases, when it makes sense to do so, our scientists will connect directly with patients’ physicians.

Molecular Testing and Tumor Boards

Q: What is molecular testing?

A: Depending on a patient’s specific diagnosis, a key step to finding their best treatment may be molecular testing of their tumor tissue. This type of laboratory test could reveal distinct features, such as genetic mutations, that can be targeted by specific treatments (“matched therapy” or “targeted therapy”). These treatments may already be FDA-approved, or they may be available off-label or via clinical trials. Patients treated with matched therapies selected through molecular testing may have better outcomes.

Q: How does molecular testing, including Tempus testing, fit into Cancer Commons’ services?

A: Cancer Commons supports patients’ ability to have molecular testing performed on their tumor tissue, and encourages patients to speak with their physicians about the benefits of molecular testing. To help facilitate molecular testing for the patients we serve, we have partnered with the molecular testing company Tempus.

Tempus testing is available to any patients who receive our services. We typically recommend it for those who have never had any prior molecular testing.

Q: What is the process for molecular testing through Tempus?

A: Once you and your Cancer Commons scientist have decided to pursue Tempus testing, we encourage you to speak to your physician so they are not surprised when contacted. Cancer Commons will submit a referral form to Tempus, and Tempus will then reach out to your physician to complete a test requisition form and obtain tumor tissue. Often, patients have frozen tumor tissue from a previous biopsy. If you do not have tissue available, you can talk to your physician about undergoing a biopsy for testing.

Once Tempus receives the completed requisition form and your tumor tissue, it typically takes 14 to 21 days to generate a listing of your molecular alterations and a report of possible therapeutic options. Your physician will receive a copy of the Tempus report and should discuss it with you. The results will also be available to your Cancer Commons scientist, who will use them to help generate highly specific treatment and clinical trial options for your specific cancer case.

Tempus will bill your insurance company for the test and will work with them to obtain reimbursement. They accept all insurance plans and are in network with Aetna and Priority Health. There is also a Financial Assistance Program available. Through this Program, most applicants who qualify for financial assistance pay $0 to $100. If you need financial assistance, your Cancer Commons scientist or nurse navigator can help you apply.

Q: What is a virtual tumor board, and what do patients gain by going through one at Cancer Commons?

A: Throughout the oncology community, treating physicians sometimes consult other physicians to seek their opinions about a given patient based upon scientific literature, as well as personal clinical experience. An organized effort of a group of this sort is often called a “tumor board.”

Tumor boards are usually made up of physicians who all work at the same medical institution. In order to involve experts who may be located elsewhere, a “virtual tumor board” may be convened. Subsets of tumor boards called “molecular tumor boards” may be used for precision oncology.

When appropriate, Cancer Commons convenes a virtual tumor board to drive suggestions for an individual patient. By going through a Cancer Commons virtual tumor board, a patient has the opportunity to hear from multiple experts from various institutions about their treatment options. The experts’ comments include both general rationales about the treatment options and rationales specific to the patient’s profile, treatment history, molecular testing results, and preferences.

Who We Help

Q: What stage of cancer do patients have when they seek help from Cancer Commons?

A: We provide guidance to patients at any stage of their disease. However, most patients seek our services when they are in an advanced stage of their disease.

Q: What are the main challenges faced by patients who seek support from Cancer Commons?

A: Patients who come to us face a variety of challenges, including:

  • How to best proceed as they navigate their treatment options
  • How to access affordable, evidence-based care, whether the patient is in an early stage of their disease, or if their cancer has recurred or spread
  • How to find trustworthy information and cancer specific specialists
  • How to choose between options when there is not sufficient clinical evidence—especially in later-line treatments
  • Which additional testing may be appropriate

Q: Of the patients who seek support from Cancer Commons, how many have already been given treatment options by their treating physicians? 

A: Almost all patients receive some form of guidance on their options from their treating physicians as their case management proceeds. But many who turn to Cancer Commons have run out of options suggested to them by their treating physicians, and they wonder if other potential options exist, particularly in the form of clinical trials or cancer clinics with expertise that may be relevant to the patient’s unique case.

Q: Of the patients who seek support from Cancer Commons, how many have already done molecular testing? 

A: About 50% of the patients we support already have some molecular testing results when they first come to us. In most cases, this means they have been tested for just one or a few specific molecular features of their cancer that could help guide treatment. But no more than 10% to 20% have had comprehensive mutational testing prior to signing up for our services. A comprehensive mutational test evaluates hundreds of genes that are often altered in cancer; for some patients, this could further expand treatment options.

Our Impact

Q: How many patients has Cancer Commons helped?

 A: We have engaged with and helped approximately 10,000 patients and caregivers.

Q: What value does Cancer Commons provide to patients?

A: A patient or caregiver who uses our services may benefit from:

  • Information about care in another city, at another institution, or from another physician
  • Help with navigation of the complicated cancer treatment landscape
  • Help with matching to an appropriate clinical trial
  • Information about treatment options to consider
  • Information about their specific disease, including the science behind their molecular alterations
  • Empowerment to advocate for themselves or for their loved ones

Q: What have patients said about Cancer Commons’ services?

A: Patients and caregivers have told us that they appreciate the responsiveness of our caring Cancer Commons scientists, the opportunity to learn what further treatment may or may not be available to them, and new knowledge about their own particular type of cancer.

Based on the feedback we receive, we believe that most patients we’ve helped feel that they were provided with additional possible treatment options, provided with information about second/additional opinions, treated with respect, and given realistic—not false—hope. We believe that a successful interaction between a patient and Cancer Commons results in the patient being at peace that they have done the best they could to deal with their difficult situation.