Not Every Cancer Needs To Be Called Cancer?

The New York Times published what I thought was a fascinating opinion piece a few days ago. It was written by two oncologists, and it is called "Not Everything We Call Cancer Should Be Called Cancer." They don't mention Follicular Lymphoma in the article, but our disease does seem like it fits into the conversation.

The authors say that, with all of the advances that have been made in understanding cancer, we haven't updated the language that we use to define it. Cancer is defined as “a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis.” (This is the definition that they use in the article, which they got from Miriam-Webster dictionary.)

The problem, as they see it, is that some things that we define as cancer don't really meet that definition. They use prostate cancer and breast cancer as examples. There are forms or stages of these two diseases that ultimately pose very little or low risk. I know a little more about prostate cancer than breast cancer, since I get regular screenings for it. I know that there are very slow-growing forms of prostate cancer that sometimes show up in elderly patients. I had an uncle in this situation. He was old enough, and the prostate cancer was slow-growing enough, that the form of prostate cancer that he had was never going to become a problem. 

There are breast cancer patients in a similar situation. Some  may be diagnosed with "ductal carcinoma in situ, or D.C.I.S.," which is also "low or very low risk, indicating the very earliest, noninvasive stage of the disease." (Again, I'm quoting from the authors -- I don't know enough about breast cancer to know how that works.)

They argue that calling something like that "cancer" -- early stage, non-invasive, unlikely to cause problems at that point -- can lead to unnecessary treatment. People hear the word "cancer" and want something to happen immediately. And so they are given radiation or surgery. And everything that goes along with it -- the financial cost, the emotional cost, the physical cost.

Maybe calling that type or stage of disease something else will not trigger the kind of reaction that "cancer" triggers. Instead, some "active surveillance" might be better, keeping an eye on the disease until it does turn more aggressive (if it ever does) and needs treatment. They suggest calling them "IDLE (indolent lesion of epithelial origin) or preneoplasia — anything but the dreaded C-word." 

It's an intriguing idea. I remember once taking a loved one to doctor's appointment, and the doctor came in with test results. She said she had identified some "abnormal cells" but then went on to something else. I stopped her. "Wait a minute," I said. "What exactly do you mean by abnormal cells?" She said that was  a bad word, and said "Let's call them funky cells instead." I told her that, as a cancer patient, the term "abnormal cells" made me very worried. She assured us that the cells were not cancerous, or even pre-cancerous, and could be taken care of very easily with no problems. 

My point is, I'm very sensitive to the language we use to talk about cancer, and I'm very aware of the complicated nature of that language. 

Of course, all of this immediately got me thinking about Follicular Lymphoma. Like the cancers they discuss in the article, some FL patients experience disease that isn't causing problems (how many of us are diagnosed when they are dealing with a completely separate health issue?). For those FL patients, "active surveillance" -- a fancier name for Watching and Waiting -- is an option. I know, having watched and waited for two years before I began treatment. 

The question is, would my anxiety have been less if the doctor had said, "You have an IDLE, something that could become more aggressive in time, but is really slow-growing now?"

I'm not sure I would have. I think I would have been in the same situation, "watching and worrying," as it's sometimes called. I wouldn't have had treatment right away -- I made the choice to wait when it was called cancer. But I don't think the emotional impact would have been any less.

It's interesting to read the comments to this New York Times article. Lots of people sharing their experience and offering their perspective. But I did read one comment that brought up the idea that, until maybe 50 years ago, the word "cancer" was never used directly with a patient. The family would be told that a patient had cancer, but the patient themselves would not. I always took it as a big step forward when patients were told the truth about their condition, so they had what they needed to make informed decisions. So not calling something "cancer" feels like a step backwards. There's the potential to minimize something that needs to be talked about.

That's an interesting perspective too.

So I'm curious -- for those of you who watched and waited, especially, who didn't need treatment immediately, would you have preferred that your disease was not called "cancer" until it did need to be treated? Would there have been less of an emotional impact if it was called something else?

As I said, I do believe that the language we use has an effect on how we handle the disease. I also believe that talking about cancer is better than not talking about it. I don't think there's a perfect answer to this, but I'd love to know how you all feel.