By T.J. Sharpe, Melanoma Survivor, Blogger & Cancer Advocate
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. One of every three females and one of every two males in the United States will develop some form of cancer in their lifetime. 1 Given the probability that you or someone you love one day will hear “I'm sorry to say…” from an oncologist, what should you know now about dissecting that first conversation and the ones following it?
First, 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 over 100 different specific diseases. 2 There are several cancer “types” that are classified by where the cancer originated (here’s a handy guide to use). President Jimmy Carter’s recent bout with cancer was occasionally (and erroneously) reported as lung or brain cancer; it was melanoma, with metastases to his lung and brain. Be sure to understand the type and classification, as that influences the available treatment options.
Truly comprehending your diagnosis and treatment options is going to 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 have completely different meanings –- stable disease is good, progressive disease is bad, and NED is the ultimate goal. No Evidence of Disease (NED) is similar to what is commonly described as “remission.” And that is just the start of the diagnosis. Once treatment starts, you’ll hear things like “partial” and “complete” response, progression-free survival, and overall survival.
There are a number of ways to detect cancer, some specific to a certain type of cancer (think mammograms for breast cancer and PSA levels for prostate cancer). The two most common detection methods for solid tumors are a CT scan (aka “cat scan”) and a PET scan. CT scans measure size; they are a series of x-rays that procure a 3-D image. A PET scan measures activity; a radioactive dye is injected and “lights up” areas of high glucose intake, which cancerous cells do. Your scans will be read by a radiologist and your oncologist will talk to you about the results, which will likely be done 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 might be best to wait to see the doctor before checking out the results.
If the suspected tumor is accessible, a biopsy is usually done to confirm the existence of cancer and do some mutation testing. This is a normal part of the cancer diagnosis; 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 “lung cancer” or “breast cancer,” but the specific mutation(s) that are in your abnormal cells.
Now that someone has broken the bad news, what comes next? For most diagnoses, you will be leaving the oncologist’s office with a suggested treatment plan or next steps to getting one. A second opinion is never a bad idea; good doctors are absolutely fine with their patients seeking the professional opinion of another expert. Some will even suggest a colleague who might offer different therapies or perspectives. The most important thing to take away from all these initial doctors’ visits is a solid understanding of what your disease is and the different available options for treating it.
Ultimately, the treatment decision is yours to make – it is vital that a patient (and their caregivers) gather all available information and processes it as best they can to make an informed choice on the first steps to tackling their cancer diagnosis.
This is the second installment in a series of blog posts authored by patient and advocate T.J. Sharpe for NovartisOncology.com. Be sure to check back regularly for new installments in this series by T.J. Sharpe. Learn more about T.J.’s story here.
*T.J. Sharpe is not a medical professional, but a patient currently undergoing care for advanced melanoma. He is being compensated by Novartis Oncology for sharing his story. All opinions are his own. Any and all information, tips, advice, etc. included throughout his series of blogs stem from his own personal experience as a patient. Patients should always consult their doctors when seeking medical advice.