Published on September 3, 2019
Am I going to die?
Let’s be honest, this is the first thing that pops into your head when you hear you’ve been diagnosed with cancer. It was definitely the first thing that I thought, and after 10 years of living with a diagnosis of metastatic breast cancer, it’s still on my mind. The good news is that in those 10 years, I’ve had the opportunity to think about other things too, like seeing my kids graduate high school and college. I’ve had 10 years so far, and still ticking.
The truth is that when you first start Googling your diagnosis, the numbers are super scary. No matter the diagnosis, you’re going to see some alarming stats online. You may not even know your subtype or stage yet, but you’re on your computer looking for answers. For a lot of people, those first doctor visits are so overwhelming that you can only remember parts of what the oncologist said—so late at night, there you are, huddled over the glowing screen, trying to figure out which numbers are going to apply to you. What are your chances?
Modern doctors don’t answer those questions. In fact, your oncologist is likely to ask you a bunch of questions about how you want to proceed with treatment. Do you want a lumpectomy, single mastectomy, double mastectomy, genetic counseling, genetic testing, endocrine therapy, etcetera? At some point, you may find yourself wondering if you should have gone to medical school. I can remember thinking, isn’t my doctor supposed to have the answers and tell me what to do?
Nowadays your doctor is unlikely to just tell you what you have to do. First of all, we have more medicines to choose from and so sometimes the answers are complicated and may include different quality of life issues. It’s not always a question of which is the best treatment, it may be a question of which is the best treatment for you.
Second, shared decision-making has been shown to increase the quality of care, so it is an expected part of your conversations with your doctor. That’s why it’s so important for patients to become informed about their options for both the short and long term. Remember, even with a stage IV, metastatic diagnosis, you can still think long term.
You don’t need to go to medical school to take an active and informed role in your own care, but you may have to do more than you thought.
So, remember, when that nasty question pops back into your head—because it will—just remember that you may have some say in the answer.
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