Taking the Bull by the Horns and Advocating for Yourself

I got a post from someone new to the lung cancer world today. I was struck by how much smarter she is than I was when I was first diagnosed.

Trusting my astute PCP

After I was diagnosed by my primary care physician (PCP), I simply did what she told me to do. By the time she delivered the bad news that I had lung cancer, she already had an appointment set up for me with an oncologist for the next day.

My husband and I went to see him and then reported back to my PCP. This went on for several visits. My caring and astute PCP wanted to make sure she was in agreement with what was being done for us. When she wasn't, she took the bull by the horns and made things happen.

For instance, my first biopsy was scheduled to take place after Thanksgiving. We visited the oncologist and my PCP the day before the Thanksgiving break. She wanted to know why we couldn't get the biopsy done that day. She didn't want us waiting around. She pulled strings and the biopsy was done before we left the hospital. Results were back before the initial biopsy was even scheduled to be done.

What if I got a second opinion...

Everyone should be as fortunate as we were to have such a champion. She is also the person who later in my journey referred me to my current oncologist. I thank God for her every day - there is no doubt but that she saved my life at least twice.

Maybe it was because we had so much faith in her that we followed blindly along with what my first oncologist recommended. He told us that I wasn't eligible for surgery or radiation and that I would begin a chemo regimen of carboplatin, Alimta, and Avastin at my next visit. We never considered getting a second opinion. Even today, I think his protocol was as good as it got for back then, but I have always wondered if another oncologist would have agreed.

Be willing to advocate for yourself

My new friend is just the opposite. Even though she was just diagnosed, she is already on forums asking questions. She has already scheduled a second opinion. She has already met with surgeons and medical oncologists. In short, she is beginning her journey with her eyes wide open.

Especially in today's world when treatment options are changing every single day, it seems, it is important, no, vital, that patients are educated and willing to advocate for themselves. This is especially true if they are treated at community hospitals where oncologists are not as specialized as they are at NCI-designated Cancer Centers. I am not criticizing any physician, but there is no way an oncologist that treats a variety of cancers can keep up with what the latest and best treatments are for every cancer with the field changing so rapidly.

My oncologist is a respected researcher and very active thoracic oncologist at an NCI-designated cancer center. Even so, it is not all that uncommon for me to mention some new FDA approval or some new trial that he had not yet read about. This is no criticism of him. I have far, far more time than he does to read about what is happening in the lung cancer world. I spend many hours a day reading and talking to other cancer patients.

Know your treatment options

The takeaway here is that it is up to you to stay informed about treatment options. Do google searches, read NCCN guidelines, talk to and ask questions of other patients on a variety of forums, listen to videos, attend conferences, make it your business to know what is going on in the field of lung cancer research and treatment. And then, don't be afraid to ask your doctor about what you're learning. If you don't feel comfortable with his or her responses, change doctors or at least go for a second opinion.

The person who cares the very most about your health and well-being is you.

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