Being Your Own Best Advocate

As I was moderating the comments on the Facebook page for LungCancer.net I found a topic that comes up a lot. People ask questions about care, treatment, and simply “what next?”. When you are given a lung cancer diagnosis, you need to remember to “be your best advocate”. I will talk about what that means to me.

We are responsible for our care

We need to remember that we are responsible for our care. The doctors, oncologists, and nurses see so many patients in a day and they are ultimately human. Now, we don’t want to think that our oncologist will make an error, but it happens! We can trust them fully that they will make the right decision for us but I feel that it is also important to do your own research as well.

There are a few ways to make treatment decisions such as fully relying on your oncologist to make the decision, doing your own research and making the decision yourself, or doing a hybrid choice and making the decision together with your oncologist.

Be your own best advocate

Second opinions are also a way to “be your best advocate”. If an oncologist tells you that there are no more options, seek out a second opinion. They may agree with the first oncologist but they may also know something that the first oncologist didn’t. I would suggest finding an oncologist in a major cancer center or university if that is plausible. Traveling is helpful but some also do remote consultations.

Navigating hospital stays

Staying in the hospital can be a part of your lung cancer journey whether it is at the beginning (like me) or more frequent. When you are admitted into the hospital you see many staff members from nurses to phlebotomy to doctors.

If for any reason you are not comfortable with a staff member you can “fire” them. I would say that in this situation it is OK to “be a Karen” in the hospital if it means getting the best care for yourself and being your best advocate.

My personal experience with incorrect information

My personal story where I felt that my family and I advocated for me is when I was in the hospital. We did have to fire a nurse because she did not give me the blood thinner shot correctly. She made it painful and while I know it is a shot, of course, it's not going to tickle, they were ways for her to make it less painful and she simply did not do that.

I was in the hospital because they found something near my heart on the scans. It was thought to be one of two things cancer progression or a blood clot. They were going back and forth on whether they wanted to do open heart surgery but ultimately decided not to. We spoke with the doctor about this and that was that. Or so we thought.

Later that day another doctor came in and started going over the possible outcomes of surgery. I signed some paperwork but my family questioned it. They asked why I was signing the paperwork and they said it was consent to open-heart surgery. So they asked for him to please check to make sure this is accurate because of the conversation that we had earlier in the day.

In the end, I did not have surgery and we all got on the same page. I was not in the right mind to be making these decisions so I am happy that my family was there with me. It did end up being a blood clot and there was fluid around my heart so it was drained and the clot dissipated.