A Well-Informed Patient
A lung cancer diagnosis is a very big burden to bear. No one ever expects to be diagnosed with lung cancer and so most people are blindsided when being told that they have it. I know this was the experience that I had anyways. I knew very little about lung cancer and so I was thrown into the learning part. I have learned so much about lung cancer that I wish I did not have to learn it. But what I have learned has made me a well-informed patient. I have learned so much in the last eight years and I have shared what I can through these blogs and from one on one help.
Be your best advocate for yourself
I get asked for advice quite a bit. Sometimes I do not feel like I should be the one giving advice and people often tell me that they look up to me even though I am only doing what I need to survive, but I digress. Two things that are asked a lot are, what was your experience when you were first diagnosed? And what is your advice to those newly diagnosed? My answer is to be your best advocate.
When I was in the hospital in the beginning, we had to fire a nurse. My family was looking out for my best interest. I was getting Lovenox injections into my abdomen twice a day. It was very uncomfortable, and I didn’t like it at all. We found that the best way to give the injection was kind of like a floating stab. The nurse that we had issues with was not administering this correctly and made me bruise quite badly. I didn’t have much space left on my belly for bad injections! We have the right to ask for a different nurse, doctor, or phlebotomist and this keeps us in charge of our own being.
Who makes the big decisions?
Who makes the decisions about what treatment you will be on? In my case, my oncologist heavily decided what my treatment plan was going to be. I have done my own research on the drugs but she has steered the path. I have not had to switch treatments in about 3 years. When it comes time to make a treatment switch I will be more informed than I have ever been. I know what my choices are and what I want and what I do not.
The exciting thing about lung cancer treatments is that there have been so many advances in even just the eight years since I was diagnosed. I have personally witnessed the approval of so many new targeted therapies, the widespread use of immunotherapy as well as a better acceptance of biomarker testing.
Lung cancer patients are living longer and being well-informed is driving lung cancer advances. We are pushing for more funding and better treatments. I have personally participated in two clinical trials.
Let me know in the comments how you stay informed and how you handle being a well-informed patient. Do you steer the course for your treatment, or do you let your oncologist decide?
What is the most useful part of this online community?