I have a confession.
I am what is considered a non-compliant patient. I am not treating my cancer the way the oncologist prescribed. And that turned out to be the right decision for me. The practice of medicine is a constant balance between benefit and risk. In my case, the risks did not support the benefit.
Here’s what happened.
The oncologist wanted me to have 6 months of heavy-duty chemotherapy prior to my surgery which is typical. It’s called neoadjuvant therapy. It can be useful to shrink tumors and decrease the scope of surgery and my choice would not necessarily make sense for everyone. The red alert light started flashing when my oncologist described the protocol. This protocol starts with an echocardiogram as a baseline as she said one of the drugs could harm my heart. “One of the drugs can stop your heart from pumping, but don’t worry, we can reverse that.” She said as casually as someone might say, “It might rain but don’t worry, we’ll give you an umbrella.” I asked her how this plan would affect the outcome of my treatment. I think this is a very important question to ask on a regular basis. “You would still need the mastectomy and some of the nodes removed,” she said. So, the best I could hope for, is to save a few lymph nodes.
This did not make sense to me.
My next step was not to consult Facebook, Google or my neighbor. Instead, I did some medical research and hit paydirt within minutes. I came upon a study published by researchers from the University of Chicago which was presented within two weeks of my diagnosis at the annual meeting of the American College of Breast Surgeons. It said there was little evidence that neoadjuvant therapy improved the ultimate outcome for most women with breast cancer in my age group. There were a few reasons to subject women my age to this process and none of those reasons applied to me. I was polite. I was respectful and even a little apologetic but I knew this made no sense for me, especially in light of this latest evidence. So, I did it the other way. I had the surgery, when I was at my healthiest, my organs undamaged by chemo. My surgeon was fine with this approach and my pathologist friend thought it was the wisest way to go.
To get the best and most appropriate treatment
In order to get the best and most appropriate treatment, patients need to do their homework and advocate for themselves. It’s worth doing some research and developing an understanding of what will happen and what the expectation is for your outcome. I am an RN with a background in journalism and did medical writing to pay for nursing school—mostly as it happens, in the area of prostate cancer. I also have the aforementioned pathologist friend reviewing my data. But you don’t need a medical background to ask good questions and have them answered in a way you can understand. Now that my surgery is done, I expect to go through some chemotherapy, possibly some radiation treatments and I will do what I can to stay in remission. However, I did not see how I would benefit from adding 6 months of toxic poison to my body prior to surgery, just because that is the protocol.
Does this mean we should give weight to anything found on the internet? Of course not. If you read an article about your disease, consider the quality of the evidence presented. How large is the sample population? How did they establish the concept? Consider the author. Is the author trying to sell you something? Who funded the study? Does the organization paying the bills have a stake in the outcome? When I was in nursing school, I saw a study about nutrition, which said there were no health issues with eating red meat. Guess who funded it? The American Beef Council. Hmmmmm….