This year more than 1.6 million Americans will be told for the first time that they have cancer. Even if there were warning signs or symptoms, the news still shocks. We all tend to hope for the best, that our fatigue is just from working too hard or that the mole on our back is merely memorable, not malignant. A cancer diagnosis terrifies.
In those first moments of discovery and dread, it’s easy to shut down, to stop thinking about what the diagnosis means and portends. But eventually the shock wears off and there are questions beyond “why me?” Asking the right questions of your physician after a cancer diagnosis is critical, not just for peace of mind but the rest of your life.
There is no specific script or checklist for newly diagnosed cancer patients. There is no precise timetable. You should ask any and all questions as they arise, but here are some of the most important, particularly in the first moments, days and months after diagnosis.
• What kind of cancer do I have? What stage is it? Has it spread?
There are more than 200 types of cancer. Squamous cell and basal cell are two kinds of skin cancer, for example, but so too are melanoma, Merkel cell carcinoma, skin lymphoma and Kaposi sarcoma. They each have different causes, symptoms, prognoses and treatments.
Doctors typically assign numbered descriptors to every diagnosed cancer case, which help them assess it and determine treatment. The tumor/node/metastasis (TNM) system is the most widely used system for the majority of cancers. A number is usually added to indicate size (the “T” of the TNM system), typically zero (if the main tumor cannot be found) to 4. The number and location of lymph nodes (N) are also described on a range from 0-4. Metastasis (M) means the cancer has spread to other parts of the body.
Most cancers are also categorized in one of five stages, again zero to 4. Zero indicates abnormal cells or carcinoma in situ. Stage 1 means the cancer is localized and restricted to the place where it began. It’s usually highly curable. Stage 2 means the cancer is a bit more progressed, but it has not grown deeply into neighboring tissues. Stages 3 indicates the cancer has grown more deeply or spread to draining lymph nodes — little filters scattered throughout your body. Stage 4 means the cancer has metastasized to different parts of the body. It is the most serious condition and the hardest to successfully treat.
Some kinds of cancer, such as brain tumors and leukemias, have their own particular staging systems.
• How many patients have you treated with my type and stage of cancer, and how successful have you been? Can you help me get a second opinion?
Despite its ubiquity and, in some cases, rising rates, cancer is often a tough disease to diagnose and even tougher to treat. You want a doctor who has experience with your condition — and measurable success. The family doctor may be a trusted friend and resource, but often a specialist is needed — an oncologist, for example, or a formally trained surgical oncologist (most are specialized in a specific cancer type, e.g., prostate cancer or head and neck cancer) who has performed the proposed procedure many, many times. Once is not enough. Your doctor should not hesitate to help you find another physician who can provide an expert, impartial second opinion.
• What are my treatment options? What are the side effects of treatment?
Generally speaking, cancer treatment tends to fall into three categories: chemotherapy, surgery and radiation — often in combination. But every year, new cancer therapies emerge, such as different types of immunotherapy (from vaccines to cell therapy), which is based upon the idea of boosting your own immune system to kill the cancer itself. One consideration is participation in a clinical trial testing a new therapy.
Very different than other diseases or even cancer treatment five or 10 years ago, the field of oncology is moving so rapidly in developing life-saving drugs that often the best therapy a cancer patient can receive is part of a clinical trial. This is clearly illustrated by immunotherapies, which are transforming this disease and are often only available in a clinical trial. Participants must meet certain criteria for each trial, but they have access to the newest thinking and the latest research.
As a National Cancer Institute-designated Comprehensive Cancer Center, the only one in the region, physicians and scientists at Moores Cancer Center run hundreds of clinical trials each year. Your doctor should be able to assist you in finding one that might work for you.
Side effects of cancer treatment range from mild and passing, such as nausea, to permanent and life-changing, such as loss of fertility. You should know all of the possible side effects and how your doctor deals with them.
• What is my prognosis? What is the survival rate?
Books and movies are fraught with doctors grimly declaring a patient has “three good months left” or “a year to live.” In fact, no doctor can precisely predict the progress of a disease or your future, but they can make an estimate based upon the accumulated experiences of others with the same cancer. There is a wide bell-shaped survival curve for most cancers, reflecting the tremendous variability in the biology and aggressiveness of each cancer, even at the same site and stage.
This is where the research and science is currently focused, and being translated to the clinic at warp speed. Much credit is due to the groundbreaking work of Craig Venter in sequencing the human genome, and others elaborating upon this evolving technology, such as being able to sequence single cells in a complex cancer and surrounding environment or new genetically engineered preclinical models involving mice, organoids and zebrafish. This work began in earnest 15 years ago. The benefits are now hitting the clinic.
Cancer survival rates describe the percentage of people who survive a certain type of cancer for a specific amount of time, usually five years. For example, according to the American Cancer Society and national epidemiology data, the five-year survival rate for women with stage 2 breast cancer (the most common cancer among women) is 93 percent; for men, the rate is 91 percent. That means that of people who have stage 2 breast cancer, 93 women and 91 men out of every 100 are living five years after diagnosis. (Though breast cancer is rare in men, their prognosis tends to be worse than for women.)
Five-year survival rates are a broad statistical indicator, but there is much they do not say. They don’t specify whether cancer survivors are still in treatment or in remission. Other types of survival rates, such as disease-free and progression-free, can be more illuminating.
A key to remember, however, is that every cancer is different in every patient. Survival rates are statistical calculations. They do not currently determine the likely fate of any single patient, but we and other major NCI centers are working on it.
— Scott M. Lippman, MD, is director of UC San Diego Moores Cancer Center. His column on medical advances from the front lines of cancer research and care appears in La Jolla Light the fourth Thursday of each month. You can reach Dr. Lippman at firstname.lastname@example.org