Frequently Asked Questions

About the MyCancerJourney Service
What is MyCancerJourney?

MyCancerJourney is a comprehensive patient navigation service paired with a proprietary data and analytics platform that powers treatment decision support for patients.

Our navigators share the effect of treatment options for people the same age, sex, race/ethnicity, and health status, with the same diagnosis. They will also review quality of life considerations related to treatments.

We are treatment agnostic. We do not provide clinical advice, specific treatment or drug recommendations.

We provide support so your members can make informed decisions with their care team.

Who is eligible for MyCancerJourney?

MyCancerJourney is available to any adult (18 years or older) diagnosed with cancer.

How does MyCancerJourney work?

After you request a meeting with a MyCancerJourney navigator, you will be contacted by a navigator to schedule your free introductory call. Your navigator will collect some health information, help you understand your diagnosis, explain the MyCancerJourney services, and determine eligibility.

Once fully enrolled, your dedicated MyCancerJourney navigator will  share the effect of treatment options for other people like you; meaning people your age, sex, race/ethnicity, and health status, with the same cancer. They will discuss quality of life considerations related to treatments, and help you prepare for conversations with your care team. Your relationship with your navigator will continue throughout your cancer journey. 

How do I get access to MyCancerJourney?

Access may be granted through your employer, health plan, or provider.

Individuals may also enroll and self-pay for the service.

How much does MyCancerJourney cost?

MyCancerJourney is free to members whose health plan or provider has an existing partnership with MyCancerJourney.

For those without coverage, a self-pay option is available.

To determine eligibility, complete the enrollment form and a representative will reach out to you within one business day.

Who are your navigators?

All of our navigators are board-certified patient advocates with specialties in cancer.

Technical Questions
Where does the data come from?

Estimates are derived from over 2-million cases from 500 hospitals and cancer treatment centers, ambulatory surgery centers, clinical laboratories, as well as physician and other outpatient offices.  Collection and reporting standards are in accordance with the National Program of Cancer Registries (NPCR); Centers for Disease Control and Prevention (CDC); North American Association of Central Cancer Registries (NAACCR); Surveillance, Epidemiology, and End Results Program (SEER) of the National Cancer Institute (NCI); and the American College of Surgeons (ACoS).

How are survival estimates calculated?

Estimates are derived using Cox proportional-hazards models (Cox, 1972), a regression model commonly used in medical research for investigating the association between the survival time of patients and one or more predictor variables. Survival models relate the time that passes, before some event occurs, to one or more covariates that may be associated with that quantity of time. In a proportional hazards model, the unique effect of a unit increase in a covariate is multiplicative with respect to the hazard rate.

Do the estimates pull from clinical trial information?

No. Because treatment trials limited by recruitment, typically exclude patients with comorbidity and fail to differentiate populations based on sex, age and race.

Has the program been validated by a third-party institution or similar?

The data used for MyCancerJourney models have been both internally and externally validated. 

Internal validation involves splitting the data up into a training set and a separate test set. Once the model has been trained, it is validated against the test set.

Statistical accuracy has been estimated using the model’s concordance and external validation of the methods used. 

The MyCancerJourney analytic platform was developed and back-tested over the past decade. Experts have validated the models in healthcare analytics at the University of Rotterdam, Erasmus. Ewout Steyerberg is a Professor of Medical Decision Making, particularly prognostic modeling, at Erasmus MC–University Medical Center Rotterdam, the Netherlands. Professor Steyerberg is one of the world’s leading experts on validating prognostic modes in medicine. Various research grants stimulated his work on prediction models, including a fellowship from the Royal Netherlands Academy of Arts and Sciences. He has published over 500 peer-reviewed articles collaborating with many clinical researchers in methodological and medical journals. 

Erasmus team performed internal and external validation of the models for the four most prevalent cancer sites (breast, prostate, colorectal, and lung). Internal validation, based on 100 bootstrap samples, demonstrated that the models provided an accurate survival prediction with an average optimism of 0.01 around the c-indices with values ranging from 0.005 to 0.01.  

The model’s clinical significance was validated through reviews by oncologists, and it has been compared to the NCI SEER and American Cancer Society outcomes data. 

Statistical accuracy has been estimated using the model’s concordance.  These models have been validated by experts at Erasmus Medical Center, Rotterdam, Netherlands.  The model’s clinical significance was validated through reviews by oncologists.

What cancer sites are included in your model?

Models to support 15 solid tumor cancers representing about 80% of adult cancer patients. 

  2. CERVIX 
  3. OVARY
  5. COLON
  8. LIVER
  10. BLADDER 
  11. KIDNEY
  14. LUNG 
  15. RECTUM
Helpful Resources
Glossary of Cancer Related Terms
  • Abscess A collection of pus.
  • Acute Withdrawal Syndrome Signs and symptoms that occur after stopping a drug or alcohol.
  • AIDS/HIV Acquired Immune Deficiency Syndrome (AIDS) is a disease caused by the human immunodeficiency virus (HIV). The virus attacks the body’s own defense or immune system, which may cause certain infections or tumors to develop.
  • Alcohol abuse The use of alcoholic beverages despite negative consequences. Ambulatory Able to walk around.
  • Amputation The surgical removal of a body part, generally a toe, foot, arm or leg.
  • Angina Also known as angina pectoris or chronic exertional angina. It is chest pain resulting from less blood flow to the heart; it may occur only during exercise or activity (exertion) and get better with rest (stable angina).
  • AODM Adult-Onset Diabetes Mellitus, also known as “Type 2” diabetes or non-insulin-dependent diabetes mellitus (NIDDM). The body can’t use insulin made.
  • Arrhythmias Heartbeat or rhythm that is not regular or “even.” It may be too fast or too slow.
  • Arterial insufficiency Decreased blood flow in the arteries, often from atherosclerosis or narrowing of the arteries. It is also known as peripheral arterial disease (PAD).
  • Ascites Buildup of fluid in the belly; it is often caused by liver failure.
  • Asthma Airways within the lungs are narrowed at times, causing less air to get into and out of the lungs. Airways may become narrowed or smaller from allergies, exercise, smoke, colds, or other things. Unlike COPD, the airways recover and the lungs can work normally after an attack.
  • Atrial Fibrillation or Flutter Irregular heartbeat or rhythm in the atria, the two top chambers of the heart, which may cause the heart to beat faster than normal.
  • Baseline pO2 Normal oxygen levels.
  • Bilirubin A chemical that is produced in the blood from the breakdown of old red blood cells.
  • Bipolar Disorder Also known as manic-depressive illness. It causes extreme shifts in mood, energy, and ability to function.
  • Body Mass Index (BMI) Having too much body fat and indicates too much weight for a given height. Using height and weight to calculate a body mass index (BMI), obesity is defined as a BMI greater than 30. A BMI between 25 and 29.9 is considered overweight.
  • Bypass An operation done when blood vessels of the heart become narrowed (by plaques or fatty deposits) by creating a detour or bypass around the blockage. Doctors use blood vessels from other parts of the body or with a man-made graft or tube to bypass or detour blood to the heart muscle.
  • Cancer Site The type of cancer is often named after the place in the body where it started. For example, lung cancer begins in the lungs, breast cancer begins in the breast, and so on. Cancers found in the blood stream, bone marrow or lymph nodes are called leukemias or lymphomas.
  • CD4+ A type of white blood cell used to track or monitor HIV infection.
  • Chronic Insufficiency Blood flow from the legs back to the heart is slowed, often due to blood clots or varicose veins (leaky valves in the legs).
  • Chronic Malabsorption Syndrome The body has trouble absorbing nutrients from food in the gut into the blood. It causes malnutrition.
  • Chronic Supplemental O2 Oxygen needed at baseline.
  • Chronic Suppressive Therapy Medications or drugs used to slow down or stop the growth of cancer cells.
  • Cirrhosis A liver disease that results in healthy tissue being replaced by scar tissue so the liver does not work as well.
  • Comorbidity These are other diseases or medical problems you may have besides cancer. Include diseases or medical problems that you take medicine for and those that you don’t take medicine for.
  • Congestive Heart Failure The heart isn’t working as well as it should and has trouble getting blood to the brain and the rest of the body.
  • CO2 Retention High levels of CO2 in the blood; it is seen in patients with COPD.
  • Connective Tissue Disorder Any disease of the connective tissue which is the structure of framework that holds the body together.
  • COPD (also called Chronic Obstructive Pulmonary Disease) Airways within the lungs are permanently narrowed, causing less air to get into and out of the lungs. Many people have trouble breathing or get shortness of breath.
  • Coronary Artery Bypass Graft (CABG) (or Bypass Surgery) An operation done when blood vessels of the heart become narrowed (by plaques or fatty deposits) by creating a detour or bypass around the blockage. Doctors use blood vessels from other parts of the body or with a man-made graft or tube to bypass or detour blood to the heart muscle.
  • Coronary Artery Disease Also called atherosclerosis or hardening of the arteries of the heart). A blockage or buildup that thickens the blood vessel walls of the heart and reduces the amount of oxygen and nutrients the heart can get.
  • Coronary Disease Heart problems caused by high sugar where the heart doesn’t work as well as it should.
  • Coronary Stent A mesh tube placed in the blood vessels of the heart to keep the vessel walls open. It is done during angioplasty when a small catheter with a balloon is used to open up the blood vessels of the heart and improve blood flow.
  • Coumadin The generic form is “warfarin”; it is a pill taken to prevent blood clots.
  • Creatine A chemical in the body that can show how well the kidneys are working.
  • Delirium Tremnes (DTs) “The shakes”; caused by alcohol withdrawal.
  • Dementia Also known as “senility”, dementia is not a specific disease, but rather a group of signs that the brain isn’t working well. People with dementia may have trouble thinking, memory problems, trouble making decisions or may not think well enough to do normal activities.
  • Diabetes Mellitus High blood sugar caused by too little insulin made in the body or insulin not being properly used in the body.
  • Diabetic Ketoacidosis (DKA) Diabetic ketoacidosis; it is a complication of diabetes mellitus characterized by high sugar, too little insulin, or acid in the blood, and ketone bodies.
  • Dialysis A machine that filters the blood after the kidneys stop working. It may be for a short time (acute dialysis) until the kidneys get better or for a long time (chronic dialysis) if the kidneys are permanently not working.
  • Diastolic Blood Pressure (DBP) The bottom number in the blood pressure reading. It is the pressure found when the heart is filled with blood and before it beats.
  • Disease Out of Control Blood cancer not responding to treatment of therapy.
  • DVT (Deep Vein Thrombosis) A blood clot in a deep vein, usually in the leg.
  • Dx Diagnosis.
  • Dyspnea Shortness of breath or trouble breathing.
  • Dyspnea at Rest Airways within the lungs are permanently narrowed, causing less air to get into and out of the lungs. Many people have trouble breathing or get shortness of breath.
  • ECG (electrocardiogram or EKG) A tool used at the doctor’s office to measure the electrical activity of the heart. Leads are placed on the patient’s chest and a tracing of the heart rhythm is printed out.
  • Ejection Fraction This term describes how much blood is pumped out of the heart with each heartbeat. It is expressed as a percentage – 55%, 30%, etc.
  • Encephalopathy A change in mental status or alertness caused by the long-term effect of high blood pressure on the brain. Also called hepatic encephalopathy. Changes in the brain due to toxins formed when the liver doesn’t work normally. Patients may have trouble thinking or tremors.
  • End-organ Failure Damage to various parts of the body from poor sugar control.
  • End Stage Renal Disease (ESRD) The kidneys permanently stop working and you need to be on dialysis.
  • Epistaxis Bloody nose.
  • Esophageal Bleeding Bleeding from veins or blood vessels in the esophagus, the tube that carries food from the mouth to the stomach. It is often caused by portal hypertension and cirrhosis of the liver.
  • FEV1 Forced expiratory volume in one second; part of the lung or pulmonary function testing (PFT).
  • Filter A filter that sits in the inferior vena cava (IVC – the main vein that carries blood from the legs) and is designed to stop blood clots from getting to the lungs.
  • Fulminant AIDS The immune system or the body’s defense is very weak and the patient cannot fight infections. HIV counts are high and CD4+ counts are low.
  • Gangrene When part of the body loses its blood supply and tissue death occurs. It generally occurs in toes, feet, fingers or hands.
  • Hemiplegia Paralysis or loss of function or movement of one half of the body.
  • Heparin A type of shot given to prevent blood clots.
  • Hepatitis Inflammation or damage to the liver caused by infections, toxins (such as alcohol), or the immune system.
  • HIV+ An infection with the Human Immunodeficiency Virus (HIV), which attacks the body’s defense system and may lead to Acquired Immune Deficiency Syndrome (AIDS).
  • Hypertension High blood pressure.
  • IDDM Insulin Dependent Diabetes Mellitus, also known as “Type 1” diabetes. IDDM usually begins in childhood and is caused by the body to stop making insulin. Patients need to take insulin in the form of shots or pills.
  • Immunosuppressant Medication Medications or drugs that lower the immune system or the body’s defense system.
  • Inflammatory Bowel Disease (IBD) Intestines become red and swollen (inflamed) at times and cause vomiting, diarrhea, belly pain, and weight loss. Crohn’s Disease and Ulcerative Colitis (UC) are both part of IBD.
  • Intermittent Claudication Pain in the lower legs (calf pain), when walking or exercising that, is relieved by rest.
  • Jaundice Yellowish coloring of the skin and/or the whites of the eyes.
  • Kaposi’s Sarcoma (KS) A type of cancer found on the skin or lining of mouth and nose in patients with very weak immune systems. It is caused by a virus and often seen in AIDS patients.
  • Leukemia Cancer of the blood or bone marrow, where too many blood cells are made.
  • Lymphoma A blood cancer of cells that are part of the lymph system; they are divided into either Hodgkin Lymphoma or Non-Hodgkin Lymphoma (NHL).
  • Major Depression Also known as clinical or unipolar depression. A medical illness that may include feeling sad or hopeless, little or no interest or happiness in normal activities, and trouble eating or sleeping.
  • Malignant Papilledema Very high blood pressure causing swelling of the optic nerve, which is the nerve to the eye needed for sight. It may cause blurriness or loss of vision.
  • Metastatic Cancer that has spread from the original or first site to nearby tissue or other parts of the body.
  • Morbid Obesity Being more than 100 lbs over ideal body weight or have a BMI >38; it is also known as “severe obesity.”
  • Multiple Sclerosis (MS) A disease that affects the brain and spinal cord and may cause vision changes, numbness, or trouble moving. It is caused by the body’s own defense system (the immune system) attacking the covering around certain nerves. Attacks come and go and may worsen over time.
  • Myasthenia Gravis A disease-causing tiredness and muscle weakness, generally seen in eye, mouth or face muscles.
  • Mycobacterium Avium Intracellulare (MAI) A form of tuberculosis (TB) seen in patients with very weak immune systems. It is often seen in AIDS patients.
  • Myeloma Cancer of plasma cells, which are cells that are part of the immune system and are found in the bone marrow.
  • Myocardial Infarction (MI) (MI) – heart attack.
  • Nephropathy Kidney problems from high sugar that cause the kidneys not to work well. Patients may need dialysis.
  • Neurologic Deficit Brain, spinal cord, muscles or nerves don’t work as well as they should because of a stroke. Examples include trouble speaking or trouble moving one part or side of the body.
  • Neurologic Residual Part of the brain damaged in a stroke doesn’t work as well as it used to. Examples include trouble speaking or trouble moving one part or side of the body.
  • Neuropathy Nerve problems from high sugar that may cause numbness or less sensation of a body part.
  • NSAIDS Non-steroidal anti-inflammatory drugs such as aspirin, ibuprofen or naproxen.
  • Obesity Having too much body fat and indicates too much weight for a given height. Using height and weight to calculate a body mass index (BMI), obesity is defined as a BMI greater than 30. A BMI between 25 and 29.9 is considered overweight.
  • Oral Agents Pills taken to help control diabetes or “sugar”.
  • Pacemaker A medical device placed under the skin of the chest that helps the heart maintain a stable or “normal” heartbeat.
  • Pancreatitis Inflammation or damage to the pancreas. It may be caused by gallstones, alcohol or other causes.
  • Paralysis Muscles aren’t working and there may be loss of feeling or movement. It may be caused by damage to the brain, spine or other parts of the nervous system.
  • Paraplegia Paralysis or loss of function or movement of the legs.
  • Parkinson’s Disease A brain disorder that may cause trouble with movement, balance or speech. People with Parkinson’s Disease often have a tremor.
  • Paroxysmal Nocturnal Dyspnea Shortness of breath that wakes someone from sleeping; it generally occurs about one to two hours after sleeping.
  • Percutaneous Transluminal Coronary Angioplasty (PTCA) Also called balloon angioplasty or angioplasty. A procedure where a small catheter with a balloon is used to open up the blood vessels of the heart. The catheter is generally introduced into blood vessels at the top of your leg, although other sites may be used.
  • Peripheral Artery Disease Blockage of arteries or blood vessels that bring blood to the body, especially the legs. It may cause pain in the legs when walking, or at rest when more severe.
  • Phlegmon Infection of the pancreas and/or the soft tissues around the pancreas.
  • Pneumocystis Pneumonia (PCP) A lung infection in patients with very weak immune systems. It is often seen in AIDS patients.
  • Portal Hypertension High blood pressure within blood vessels of the liver, which may cause a fluid collection or swelling of the belly. It is often caused by cirrhosis of the liver.
  • Pseudocyst Collection of fluid around the pancreas, generally caused by pancreatitis.
  • Pulmonary Embolism (PE) A blood clot in blood vessels of the lungs.
  • Pulmonary Insufficiency Breathing problems where the lungs cannot take in enough oxygen for the body.
  • Relapse When a disease returns or comes back.
  • Remission When a disease (cancer) is responding to treatment or is under control.
  • Renal Insufficiency The kidneys aren’t working as well as they should and have trouble getting rid of waste and water. It is also known as renal failure.
  • Restrictive Lung Disease Any disease that stiffens the lungs or prevents the lungs from expanding as much as they should.
  • Retinopathy Eye problems from high sugar causing trouble seeing or blindness.
  • Rx Prescription.
  • Schizophrenia A psychiatric or brain disease that may cause unusual thoughts, emotions and behaviors. People with schizophrenia may see or hear things that other people don’t see or hear. They may also believe that others are trying to control their thoughts or trying to hurt them.
  • Secondary End-Organ Failure (renal, cardiac, CNS) Other organs or body parts stop working well as the connective tissue disorder gets worse.
  • SEER Stage Staging refers to how far your tumor may have spread from the place in your body where it started. Staging looks at tumor spread in three ways: 1) under a microscope on a cellular level, 2) with radiologic imaging (CT scans, MRIs, PET scans, etc.), and 3) with a physical exam or clinical evidence of disease.
  • Sick Sinus Syndrome Unusual heartbeat or rhythm caused by a problem with the sinus or sino-atrial (SA) node in the heart, which is the heart’s natural pacemaker.
  • Solid Tumor A mass or group of unusual cells in the body which may or may not be cancer. It is generally named by the type of cells that form them. They are NOT cancers of the blood.
  • Stress Test Also known as a treadmill test or an exercise test. It is done to see how well your heart works during exercise or activity (exertion). A thallium stress test is when dye is injected into the blood and pictures or images of the heart show how well blood is flowing during exercise or activity.
  • Stroke Also known as a “brain attack.” It is caused by not enough blood reaching the brain, from either a blood clot in the brain or an artery in the brain breaks and bleeds.
  • Substance Abuse Harmful or hazardous use of certain substances, such as alcohol or illegal drugs.
  • Thoracic or Abdominal Aneurysm An enlarged or bulging part of the aorta, the main blood vessel of the body. The bulge is caused by a weakness in the blood vessel wall. The bulge or dilation is generally measured in centimeters (cm).
  • Transfusion Blood transfusion; blood is given through an IV line into the body.
  • Transient Ischemic Attack (TIA – or “Mini-Stroke”) There is less blood flow to part of the brain. It may cause numbness, vision changes, trouble walking or speaking that lasts less than 24 hours or one day.
  • Ulcers Breakdown or hole in the lining of the stomach or intestine caused by acid, bacterial infection, NSAIDs, or smoking.
  • Uncontrolled Cancer Cancer that is not responding to treatment or therapy.
  • Unstable Angina Severe or prolonged chest pain or chest pain that continues with rest. You should notify your doctor if you have this type of pain.
  • Vertigo A type of dizziness; a feeling of spinning or whirling while standing still.
Cancer Supplies and Resources
Support Hotlines and Websites

This section is a list of resources – both hotlines and websites – that may be of help. This information is not a substitute for professional advice or care. If you are in need of support, please reach out to your doctor, one of these organizations, another local organization near you, a loved one or friend. Support Hotlines and Websites:

  • American Psychological Oncology Society APOS Toll-Free Helpline, part of the Cancer Support Helpline, helps cancer patients and their caregivers with emotional support by phone, and by connecting them with emotional health resources in their community: 866-276-7443 (866-APOS-4-HELP).
  • Livestrong Foundation Free services for cancer patients and survivors and advocates for policies that improve their access to care and quality of life: 855-220-7777.
  • National Mental Health Association Information on mental health topics and referrals, access to specialists: 800-969-6642.
  • National Suicide Prevention Lifeline 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress: 800-273-TALK (8255) or 888-628-9454 (en Espanol).

Other Helpful Sites:
MyCancerJourney is a comprehensive patient navigation service paired with a proprietary data and analytics platform that powers treatment decision support for patients.
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