“Getting cancer is like a bomb going off in your life.”
This is the opening line of Braving Chemo, the chemotherapy patient education book that I began writing nearly four years ago, as I was recovering from my own chemo treatment and a double mastectomy. I’m in remission now and far healthier than I was at that time, but I still feel that these words are true. Hearing the news that you have cancer sends your life into chaos and your brain searching for answers.
Like any good scientist, one of the ways that I coped with the chaos and fear of having cancer was to study. I studied the medical literature with a vengeance and I went to my follow up oncology appointments with questions. I asked about whether I needed further radiology scans (yes) or genetic testing (also yes). When I clarified my treatment plan it turned out that I would be getting chemotherapy first, a common plan for my type of breast cancer. It was only a few weeks from diagnosis to my first chemotherapy treatment, and at whirlwind speed I gathered my information, discussed it with the various physicians on my team, talked things over with my family and started chemo.
I’m aware that being a physician gave me an advantage in the confusing and frustrating arena of healthcare. I had medical knowledge to help me ask the right questions and to find answers on my own. I was familiar with the medical world from the inside and I knew a few short cuts. Often during my months of cancer treatment I wondered, “How does anyone without a medical background ever navigate cancer treatment?”
To help solve the challenge of navigating healthcare, I recommend several questions to ask your oncologist. These questions will help you gather your information and orient yourself to what you’ll need for cancer care planning. It’s best to ask these questions when you are first diagnosed with cancer, but you can ask them anytime and you can ask again as time passes. Here’s the list, excerpted from Braving Chemo:
Questions to Ask Your Oncologist
What is the full name of my cancer?
What is the grade and stage of my cancer? (most cancers have both)
Has my cancer spread beyond the primary tumor?
Is there a molecular or genetic subtype to my cancer? If so, how does this affect my treatment options?
Do I qualify for a clinical research study?
What treatments will I need to have? (ex: chemotherapy, surgery, immunotherapy, hormone therapy, radiotherapy, oral medication)
How long will the total treatment last?
What are the common side effects of the treatments?
Will I be able to go to work or school during treatment?
Is the goal of my treatment to cure my cancer?
If my cancer may be not curable, will the treatment make me feel better or live longer?
If my cancer is very advanced, do you recommend consulting a palliative medicine doctor or a hospice program? If that’s not the plan now, how will I know when it’s time for a hospice program?
This is a starter list of questions – I’m sure that you’ll have many more depending on the specifics of your cancer, your treatment and your lifestyle. The point is, make a list and ask questions! When you establish good communication with your oncologist and treatment team, you’re more likely to feel comfortable bringing up doubts or problems should they arise. Even though asking questions can’t completely take away the feeling of chaos, nor quash all your fears, I think you’ll find that knowing the facts about your cancer and treatment will help you feel less stressed and be better prepared to face whatever lies ahead.