A Conversation with My Endocrinologist

Yesterday I saw my endocrinologist for my annual visit. At the end of her exam we had a brief conversation on being followed for thyroid cancer vs being followed because I have no thyroid.

I had an endocrinologist until the mid-1990s and then she retired and I had a primary care (and didn't need any other doctors for a long time - much different than now). In 2009, the Thyroid Cancer Survivors Association had their annual conference in Boston so I volunteered and attended it. Everyone else there talked about what their endocrinologist said to them and, their blood levels, and how they tweaked their meds all the time. Then I realized that I didn't have an endocrinologist and wondered if I should.

I went to a few of the sessions, including one lead by an endocrinologist who talked about various aspects of what they do. At the end of the session, I went up to the presenting doctor and asked him if he thought I should have an endocrinologist and he said yes. So I found a new one and started getting regular follow ups. Now seven years later, I go for yearly visits and ultrasounds every couple of years.

Yesterday, I asked Dr. C, my endocrinologist, about possible recurrence after all these years. She said its possible, but chances are slim, but there really is no real research data on this. So that was pretty inconclusive. We also talked about the new rates of diagnosis for thyroid cancer. She feels that this is largely due to new technology which allows for smaller nodules to be seen.

Back when I was diagnosed, ultrasounds were not even available. Thyroid cancer was usually only found by seeing a bulge on the patient's throat. This was then followed by a surgical excision. Most were benign but not mine.

We also discussed the fact that while I do need an endocrinologist because of my lack of thyroid, it is uncertain if I really need the cancer follow up. This includes ultrasounds to see if there is any regrowth (we really do not want that). But since cancer can be very sneaky, you never know. Thyroid cancer has been known to recur decades later even though there is no supporting research. So we will continue the cancer follow up part for now with ultrasounds every couple of years.

I will also receive life long blood work for my replacement thyroid hormone. No way around that one.

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.

So what does that thyroid do anyway?

All of us thyroid cancer people may have fewer problems with their cancer treatment than the life long problems they face with out a thyroid. Do you have any idea what exactly your thyroid does? Most people don't so don't worry if you don't know.

Finally I have found an article that easily explains what exactly a thyroid does.

"The thyroid is a small hormone-producing gland in the neck that controls our metabolism,” explained Army Col. (Dr.) Henry B. Burch, chair of the Endocrinology Division and professor of medicine at the Uniformed Services University of the Health Sciences. Burch is also the endocrinology consultant to the Office of the U.S. Army Surgeon General, and works in Endocrinology Service at Walter Reed National Military Medical Center (WRNMMC).

“In addition to controlling metabolism, the thyroid plays a key role in maintaining [body] temperature, or thermogenesis,” added Burch, whose work has been published in the Journal of the American Medical Association (JAMA)."
So the one big thing it does do is regulate your metabolism. And what exactly does your metabolism do? Well its kind of complicated. Try reading this to get a basic idea but its your body's little engine that keeps it going. And without a metabolism your body just slows way down and turns into a little blob. I just laugh at all those diet tips that tell you to 'ramp up' your metabolism or your thyroid.

And that temperature control thing? I'm always cold. Unless its 100 degrees with 100% humidity and then I'm just whiney.

So imagine if you had to control your metabolism by taking pills for the rest of your life and always feeling cold. This is life after thyroid cancer.

American Cancer Society's 2016 Outlook

Earlier this week, the ACS released its new outlook for 2016 for cancer death rates in the US. As part of this, they provided four essential cancer charts. I found them very interesting, and hopeful. The first chart deals with cancer death rates over decades.

And the answer is they are going down. Look at the changes since 1990 or so! Look at the declines. The point is there, the death rates are lower than they were 25 years ago. Modern medical research has made a big impact on cancer deaths in case you were wondering why we spend so much is spent on it.

The next chart deals with types of cancer being diagnosed each year. I am very disappointed to see that thyroid cancer has made it into the top 5 types of cancer diagnosed for women each year.

The third chart shows us where lifestyle related cancer causes are highest. No surprise there - the deep South where obesity and poverty rates are highest also has the highest cancer rates. The healthiest people are in the West.

Finally, this is the chart that strikes the deepest chord with me. Look at how the rates of thyroid cancer have increased in recent decades.

Thyroid cancer used to be very rare. Not so much any more. More on these charts is available here.