Doctors Should Speak Clearly

I really dislike a lot of doctor speak. They say things like 'with your medical history we need to be sure' or 'that really needs more research before we can tell if it would be right for you'. Then they try to add explanations about things that include the words 'that's a possibility' or 'we could consider that'.

What exactly does the word 'consider' mean? I had never really thought about that until I read this blog post that was mentioned on Facebook and then I got really irritated. If a doctor says they will 'consider' a potential treatment protocol? Does that mean they want to go look something up about it or they want to prolong my agony? Why can't they just say there's a new option for you that looks pretty good.

I think doctors get trained so much (and have to keep potential malpractice suits in mind) that they hesitate to speak directly about anything. They feel the need to insert all the fine print you see in a print ad for a medication to cover all the potential side effects or 'adverse reactions' into their words. Can't they just drop the doctor speak and talk clearly to a patient.

Its just you and your doctor sitting in an exam room or their office, and they have to speak in circles so there is no chance you could ever sue them for anything. Its unfortunate that some people feel the need to sue too quickly and even more unfortunate that some doctors abuse their power and some patients suffer as a result. The rest of us patients pay the price for that in the resulting doctor speak.

I think if doctors spoke clearly to their patients and talked to us like a person instead of as a potential lawsuit? And if they didn't use the words like 'consider' or 'possibility', wouldn't we all be better off?

No Longer A Cancer

Just like Pluto is no longer a planet, one type of thyroid cancer is no longer a cancer.

"An international panel of pathologists and clinicians has reclassified a type of thyroid cancer to reflect that it is noninvasive and has a low risk for recurrence.

The panel renamed encapsulated follicular variant of papillary thyroid carcinoma (EFVPTC) as noninvasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP)."

So you used to have cancer but now you don't any more. This isn't a cure in any way, shape, or form. Its a bit of fancy word play if you ask me. And its a way to prevent overdiagnosis. (Isn't that smart.) Its sort of like sending a rocket to Pluto and then deciding not to after it was already on its way.

For me its a bit of a different story. Back at my thyroid cancer diagnosis, I was told I had both follicular and papillary. I don't think they had any way of diagnosing subtypes then so I have no way of knowing if the follicular thyroid cancer I had was this non-cancer type or not. This is not helpful to me at all.

"Dr Nikiforov and colleagues point out that the incidence of EFVPTC has risen two- to threefold during the past 20 to 30 years and makes up 10% to 20% of all thyroid tumors diagnosed in Europe and North America. This increased incidence has been explained by improvements in diagnosis. It has been described as an "epidemic of diagnosis" rather than a true increase in disease."

This is part of the movement to decrease over diagnosis and over treatment. Okay, I can understand the over treatment part but not the over diagnosis part.

"In 2013, a working group sanctioned by the National Cancer Institute proposed that a number of premalignant conditions, including ductal carcinoma in situ and high-grade prostatic intraepithelial neoplasia, should no longer be called "cancer."

Instead, the conditions should be labeled something more appropriate, such as indolent lesions of epithelial origin (IDLE), the working group suggested. "Use of the term 'cancer' should be reserved for describing lesions with a reasonable likelihood of lethal progression if left untreated," the group said at the time."

Over diagnosis is a problem that I can agree with. However if its an ailment that requires treatment it should be treated appropriately. I also can agree if people are told what they have is not cancer, it may be significantly less stressful for the patient and their family. But if it is something that could turn in to cancer and kill you in the long run, the word cancer should not be removed from the name. And if you can't tell which it is, just assume the worst and treat accordingly.

Language Please!

I am not very happy with the language used to describe people who are less than healthy. Just like the mental health community has changed their words to avoid calling people the "R-word", we need to get rid of some other words as well.

I'll start with that awful S-word, the one to describe people with cancer. Ditch it. Please. I didn't survive anything more than a boat load of doctor appointments. And by the way you can get rid of all those war-related ones too. The B-word (battle) is another awful one. Fight? Fighting a cold is okay because I think its a short term inference and I can live with that. Fighting cancer? Not so good.

Next there is another S-word, we'll call it S-word2, or 'Sufferer'. First of all its hard to say. Eat some peanut butter and try to get it out. I suffer from pain, not a disease. And don't call me that word either.

What are good words to use? I can be someone living with cancer, rheumatoid, or fibromyalgia. Or I could be an arthritis patient. But I would really just like to be a person, not a statistic, a number, a survivor, a sufferer, a battler. Just a person.

Low risk 'cancers'

So is it cancer or not? Sometimes they can't tell. For example which cases of DCIS will go on to turn into a potentially fatal breast cancer. Or which cases of thyroid lesions will actually grow into thyroid cancer? There is a growing epidemic of new cases of thyroid cancer and the question is which cases that are discovered will actually turn into cancer that could be fatal and which will not.

So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....

So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment?  "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."

I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.

Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.

An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.

I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.