After being diagnosed with a rare form of cancer — and seeing a clinician who did not know how to treat me — I learned the importance of asking questions to my providers and advocating for myself
When it comes to doctors’ appointments, I get a little anxious. Doctors’ appointments and cancer patients have a love-hate relationship, speaking from experience. For me, I really didn’t know what news I was going to get at my appointments, so if it was good news, I was elated, bad news not so much.
When I was first diagnosed with peritoneal mesothelioma, I was going to an oncologist who knew nothing about this rare cancer. This was 16 years ago and from what I remember, every time I had an appointment, we would go over my bloodwork, specifically, my hemoglobin levels because I was anemic. That’s it. And my next appointment would be the same exact thing.
I was young at 21 years old, but I wasn’t dumb. I figured this can’t be all he’s going to do. I asked him questions, but he didn’t have or know the answer I was looking for.
Being told you have a rare cancer with a poor prognosis is scary — even scarier when you’re told it’s not only rare, but it’s one of the rarest forms of the rare cancer, with the typical patient living no more than 18 months. But here’s the kicker, I wasn’t the “typical” patient and didn’t fit the description. If you would ask me and probably anyone else, I was the opposite of the typical person who would get peritoneal mesothelioma. I’m a young female who never worked in or around asbestos.
The first step in my advocacy journey was asking questions. I started asking the oncologist more about what this disease was; he didn’t know. I asked what the plan was for my treatment; he didn’t know. I asked how could he help me; he didn’t know. So finally I asked if he could help refer me to someone who can.
Honestly, I do believe that this particular doctor was waiting for the 18 months to come and for palliative care to be the only option. It still nudges me the wrong way saying that aloud. It was as if he was stringing me along until that time came. But I knew God had other plans for me and it wasn’t to die from cancer at the age of 21.
It may sound strange to make a check list of questions for doctors’ appointments, but I realized that it is vital. Making a list provides a great way to make sure no stone goes unturned. I made a list of generic questions to ask. As I got more comfortable I figured out what to ask specifically about my situation. Here is what I learned to be helpful:
I realized that patients have the right to ask questions and even disagree with their physicians. So now I encourage others: don’t feel bad or like a burden for asking questions. As a cancer patient you are your best advocate!
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