After the surgery to remove my left tonsil and the report from the lab that it was cancerous, the real journey began.
I wanted to find out as much as I could about my cancer and the treatment options. I also had sought a second opinion. My team was following the NCCN (National Comprehensive Cancer Network) protocol. So, I went to the NCCN website to familiarize myself with the data.
It makes sense that physicians rely on the guidelines that result from research and experience. The problem I have with protocols (aka systems) is that they can tend to become one-size-fits-all approaches. This is not just true of our medical systems, but applies to many procedures and processes.
As the patient, I wanted to be an active participant in decisions about my treatment. So, I did a little research. There is a lot of information to be found online. It’s easy to find reputable sources. Make sure you’re using reputable, fact-based sites.
Deciding on a Treatment Plan
As the patient, you should think about this: Do you want to turn all decisions over to your medical team, or do you want to be an informed participant in your treatment decisions? If you choose the latter, you’re going to have to do a little research on your own. The doctors will not, nor do they have time to, tell you everything.
I was of the mind that my treatment decisions were, at least in part, up to me. I am, after all, the sole proprietor and resident of this body. I get to decide what to do with it.
No one is happy about getting a cancer diagnosis. But I found that doing a little research helped me formulate questions for the doctors that would inform my treatment decisions.
You might choose otherwise – to leave the decisions up to the medical team – and that is certainly a valid choice. The data can be confusing; it might make you nervous or upset. A diagnosis of cancer is stressful enough without adding more stress to it.
Most of my doctors, as well as the entire team that supported me, were kind, patient, and willing to get to know me as an individual. One doctor was a bully. He wasn’t my doctor for long.
Even as I write this, I hesitate to tell the story. I don’t like bringing negativity into my life. But I think it’s important to share.
A Short Story About a Bully
If your read my previous post, you might remember that there was a difference of opinion among the doctors that I consulted. One hematology oncologist was adamant that I didn’t need chemotherapy. I trusted his opinion because he is experienced and respected in the community. After working for many years at the hospital where I was to get my treatment, he had gone into private practice. His primary business is chemotherapy. In other words, he had nothing to gain financially from telling me I didn’t need chemo, because if I didn’t receive chemo, I would not be his patient.
His analysis had raised some doubt with my surgeon and my radiation oncologist as well. So, they too took another look at my post-op scans. And, they called him to discuss my case. They also consulted with other doctors whose opinions they respected. I greatly appreciate them for taking my concerns seriously.
In the center where I was to receive my chemo, there was a team of hematology oncologists. A doctor was assigned to me. My daughter and I had met with him only once, before I sought the second opinion. At that first meeting he seemed professional and knowledgeable. The second meeting with him, however, was a total disaster.
We had scheduled a second appointment because we still had questions. We had made a list of questions about the impacts of chemotherapy. We were organized and respectful. We weren’t there to waste his time. (Which, I realize upon writing this, is ridiculous. I was, after all, paying for his time.)
In that second meeting, he was a totally different person. He was impatient and seemed annoyed. He took a stern tone with us from the beginning, reluctantly answering a few questions. And, we were to find out, he was the only doctor on my team who had not discussed my case with the oncologist who had a different opinion about chemotherapy.
The conversation deteriorated quickly. Very soon he began to dismiss our concerns, refusing to address any of our questions. No matter what we asked, he had one answer: “It doesn’t matter. You have cancer.”
We had been respectful and cooperative, even when he was not. I wish now that I had counted how many times he said it, “It doesn’t matter. You have cancer.” He repeated it like a refrain.
“It doesn’t matter. You have cancer. It doesn’t matter. You have cancer.”
Then he said something that was especially troubling: “You have cancer. It’s fast growing and we need to get it before it spreads.” With that, he called in his nurse and left the room.
Not only is this a terrible way to treat a patient, or anyone for that matter, it was also contrary to all the information we had been told to date. Multiple doctors, the center’s Cancer Review Board, and the information I had researched online all indicated that my cancer was slow growing and didn’t generally metastasize.
Why was he bullying me? Why had he resorted to scare tactics? I’ll never know. But I knew this: that man would never be my doctor.
A Word About Advocacy
I can’t emphasize enough the importance of advocacy. You don’t have to do this alone. In fact, given the experience I just told you about, I think it’s unwise to go it alone.
I was fortunate that my daughter was available to attend preliminary consultations with me. After our meeting with the bully, she told me that if she hadn’t been there, she wouldn’t have believed it. The doctor’s behavior was totally different from our first encounter with him.
Afterwards, we scheduled a meeting with the patient advocate. Every institution should have one. If patients don’t report abuse, the institution has no way of knowing about or correcting it.
You should be at the center of your treatment. Do not allow anyone on your team to intimidate or bully you. This only adds to your stress. And stress does not complement healing.
There is so much more to cancer than the disease. There’s the patient. This is happening to a real person, a living, breathing individual with opinions, beliefs, a life, and choices of their own.
There are consequences and side effects to any medical intervention. In our very specialized medical system, the doctors tend to focus on their specialty. They may not inform you of potential negative outcomes and impacts to other parts of your body. Consequences that have nothing to do with their specific field.
Talk with your entire support system: doctors, social workers, dieticians, therapists, clergy, and your family. They are all there to help.
The focus of our medical system is to save lives. And that’s a good thing. But some doctors see death as a failure. Much as we don’t like to think about our mortality, it is a fact of life.
As a patient, it is your responsibility to make decisions about your quality of life.
I made the decision with my daughter. She is my only child. She knows me well. She understands who I am and what I want out of life. She understands that quality of life is much more important to me than quantity. That said, I love my life! And I’m not done yet!
In the end, I opted to undergo both radiation therapy and chemotherapy. I would receive both therapies at the same time. Seven weeks of daily radiation and six weeks of chemo.
My new hematologist was sensitive to my concerns. She suggested a more frequent, less potent regimen, so that if the chemo made me unbearably sick, we could stop. There would be less of the drug in my system, less of the drug for my body to work on eliminating. This turned out to be a good choice for me. And I will be forever grateful to her for listening to my concerns and designing a treatment that we both agreed with.
If you’re interested in knowing more, stay tuned. In upcoming posts, I share more about my journey. Leave a comment or question, if you like. Feel free to share this post with others who may be interested.