Before I was diagnosed with medullary thyroid cancer (MTC), I didn’t really have any experience with the health care system as a patient. Sure, the usual checkups, dental appointments, yearly physicals, and in more recent years, trying to find answers to what ailed me. Never, however, was I exposed to it in the same way as post-diagnosis.
On my career side, I am immersed in the health care system. I am a registered nurse and currently work in a pediatric cardiac intensive care setting. This has been my home unit for the last 8 years. I have seen health care work for patients more than I have seen it fail patients.
When I compare this to my experience, however, I feel like I received a very different view of the system as a patient. Today, I understand that some of this can probably be traced back to pediatric vs adult medicine. Patients who age out of pediatric care often recount how their treatment in the adult world of health care is much less organized and comprehensive.
It is unclear to me why exactly this is. One of the reasons my coworkers and I can come up with is that pediatric patients are cared for more intensely simply because they are kids. No one wants to see children suffer. Not that health care professionals ever want to see anyone suffer, but I have found even in my own practice that I do tend to go the extra mile for younger patients, even though it is very much subconscious.
In the adult world, I often felt like I was just another number. Just another chart to get through before the end of the day. Some of the more vivid memories I have as I started my journey are not positive ones. Let me share just a couple with you.
I think the fact that it took me years to actually get a correct diagnosis speaks for itself. Having to fight for every test and searching out different physicians to find the right answers should not be this difficult.
Secondly, I am a health care worker myself. I have an idea of which tests I should ask for or what to expect to happen next. Most people don’t have this knowledge. They fully rely on their health care team to not drop the ball. They rely on professionals to book the right appointments, interpret the results correctly, and at the same time, prepare them for what is next.
This is where my second experience comes in. After I finished with the surgeon (surgery and follow-ups completed), I was told I would be referred to the cancer institute in our city within 2 weeks. A month went by without so much of a word from either my surgeon or the cancer institute. When I started to follow up with them, I was told my referral was never sent. Plus, my surgeon’s office was on summer vacation.
I had completely fallen through the cracks. No one even knew it happened, because they either assumed I wasn’t their “problem” anymore, or they didn’t even know about me yet. Without taking the initiative, I could have been waiting for months to hear back from either medical office.
Read more about experimental therapies for MTC
Another example I would like to share is the fact I was never referred to an endocrinologist. It is unclear to me if that was simply an oversight or if I should have expected this. I was told my family physician was supposed to take care of regulating my thyroid levels and medication.
Countless times, I found myself either not able to get an appointment with my family physician or those physicians not knowing how to treat me properly. MTC patients are often needing different levels of care than other thyroid cancer patients, which is what most health care professionals are not familiar with.
In many ways, I count myself lucky to have received standing orders from my physicians and know what I needed to look for myself. Every 3 months I took my orders and went to get bloodwork done. Half the time, I wouldn’t even hear back from my primary care physician. I do receive my results through “My Chart,” however. So, I would call the office to make an appointment if they hadn’t called me after the results were in.
Most chronic patients will eventually understand their own lab values, however, that often takes a while of dealing with the disease. It also takes health care providers to explain their values and target values to the patient. Fortunately, I had this knowledge, being a nurse myself. I could advocate for myself almost from the get-go. Many patients don’t know how to advocate for themselves or that they often need to.
Learning the different angles of health care has been very eye-opening to me. It has helped me in my own practice to be more aware of when patients might be slipping through the cracks. It has helped me to understand when I may need to take the extra time to explain things in more detail. On the other hand, it has also taught me to have more grace and understanding for my health care team.
Everyone is trying their absolute best for their patients. With a little more insight, I hope we can make that best even better.