Facing a cancer diagnosis is one of the most daunting moments many will ever experience. This is something I can personally attest to. Sometimes the conversation is expected; other times it comes from left field. In the US alone, one in every three females and one in every two males will develop some form of cancer in their lifetime. 1 Given the probability that you or someone you love will one day hear the words, “I'm sorry to say…” from an oncologist, it’s a good idea to understand how a cancer diagnosis typically works.
First, if you are a patient, what is it that you actually have? Cancer is defined as a disease caused by an uncontrolled division of abnormal cells in a part of the body, and is the broad term for more than 100 different specific diseases.2 There are several cancer types that are classified based on where the cancer originated (here’s a handy guide to use). Former US President Jimmy Carter’s recent bout with cancer was occasionally – and erroneously – reported as lung or brain cancer, but it in fact was melanoma with metastases (the spread of cancer cells) to his lung and brain. Be sure to understand the type and classification, as that influences the available treatment options.
Facing a cancer diagnosis is one of the most daunting moments many will ever experience. This is something I can personally attest to.
Truly comprehending your diagnosis and treatment options will take a very long time unless you are trained in a medical field. You are going to learn a whole new language, and some words and abbreviations will take on completely different meanings (for example, “stable disease” is good, “progressive disease” is bad, and “NED” is the ultimate goal). NED stands for “no evidence of disease” and is similar to what is commonly described as remission. Once treatment starts, you’ll also hear terms such as “partial response,” “complete response,” “progression-free survival” and “overall survival.”
There are a number of ways to detect cancer, and some are specific to a certain type (think mammograms for breast cancer and PSA levels for prostate cancer). The two most common detection methods for solid tumors are a CT scan and a PET scan. CT scans measure size; they are a series of X-rays that procure a 3-D image. PET scans, on the other hand, measure activity; a radioactive dye is injected and “lights up” areas of high glucose intake, which can detect cancer. Your scans will be examined by a radiologist, and your oncologist will talk to you about the results (this will likely happen before any treatment is discussed). Some hospitals will have your results in a patient portal you can access, but if you are the type who gets anxious, it may be best to wait to see the doctor first.
If the suspected tumor is accessible, a biopsy is usually done to confirm the existence of cancer and to conduct some mutation testing. This is a normal part of the cancer diagnosis process because your oncologist will want to have the most information possible before suggesting a treatment plan. As precision medicine evolves at a rapid pace, the diagnostic tools available will one day (soon, hopefully) be able to identify the treatments that are most effective for your cancer – not just for lung cancer or breast cancer, for example, but for the specific mutation(s) that are in your abnormal cells.
Now that someone has broken the bad news, what comes next? In most cases, you will leave the oncologist’s office with a suggested treatment plan or guidance on how to obtain one. Getting a second opinion from another expert is never a bad idea, and good doctors do not have a problem with this. Some may even suggest a colleague who could offer different therapies or perspectives. The most important thing to take away from all of these initial doctors’ visits is a solid understanding of your disease and the different available options for treating it.
Ultimately, the treatment decision is yours to make. It is vital that a patient (and his or her caregivers) gather all available information and process everything as best they can to make informed choices about what comes next.
This is the second installment in a series of blog posts authored by patient and advocate T.J. Sharpe for Novartis.com. Check back regularly for new installments and learn more about his story here.
A melanoma survivor shares key insights to help navigate a #cancer diagnosis.