Active surveillance for thyroid cancer

Papillary thyroid cancers are overtreated

In 2010 my husband almost died while being treated for a small papillary thyroid cancer.

Papillary tumors are by far the most common type of thyroid cancer, and are typically very slow growing. Most doctors I know say that if you have to get cancer, papillary thyroid cancer is the one to pick!

My husband didn’t choose to get thyroid cancer, of course, but once his primary care physician found the lump during a routine physical, he was put on a fast track to being overtreated.

Back then, we just didn’t know any better.

I am a nurse and many of our friends are doctors. We had absolute confidence that we were getting the “best” treatment plan from the “best” head and neck (ENT) surgeon in town. We didn’t seek a second opinion or really ask any questions other than “When?”

My husband underwent two surgeries. The first was the biopsy, which removed the lump and one lobe of his thyroid. That procedure went as expected.

The second surgery removed the other half of his thyroid gland. His surgeon prescribed a (unnecessary) pre-op medication that caused his heartbeat to become so slow during surgery, he had to spend an extra night in the hospital having his cardiac status monitored.

After recovering from his two surgeries, he underwent the typical thyroid cancer treatment, I-131. This involves stopping replacement thyroid medication (levothyroxine) for two weeks and then popping a radioactive pill. The I-131, or radioactive iodine, seeks out any thyroid cells still in the body, and pretty effectively kills any leftover cancer cells.

It sounds simple, but going without the levothyroxine made my husband very ill, and a series of abysmal communications and medical errors led to a 911 call, a trip to the ER, and a two-day stay in the intensive care unit.

Now we know that if we had asked the right questions, or gotten a second opinion, my husband might have been spared not only the second surgery and the near-death experience in the ICU, but a lifetime of taking levothyroxine.

On the plus side, that whole horrible experience is what created Frugal Nurse!

Surgery isn’t always the answer

Last week that my husband’s older brother was also diagnosed with a small papillary thyroid cancer. His surgeon is recommending the same treatment as my husband, a total removal of the thyroid gland followed by I-131.

He called us for our advice.

We told him what we had learned in the last seven years: that papillary thyroid tumors are typically non-aggressive and non-life threatening, and a total thyroidectomy and I-131 treatment are not always necessary.

We sent him this link to a recent article from Memorial Sloan Kettering Cancer Center:

Advances in cancer detection have saved many lives, but they have a serious drawback: Some cancers are being overdiagnosed. This leads to unnecessary treatment of tumors that never would have posed a threat if left alone.

For example, the reported rate of thyroid cancer in the United States has more than doubled since 1994, as scans have increasingly found tiny tumors that would have escaped notice in the past. Despite this surge in detection and treatment, the death rate for thyroid cancer has not budged — an indication that these tumors were not life threatening.

Sloan Kettering is advocating “active surveillance,” the watchful waiting approach.

If our thyroid cancer team feels that immediate surgery is not required, we offer the chance to have an ultrasound every six months for two years, when we will look closely at the site of the cancer and the nearby lymph nodes to see if there is any change. After two years, we start spacing out the ultrasounds, to every nine or 12 months.

We know that in the vast majority of cases, if thyroid cancer progresses, it’s going to happen very slowly — in which case our surgical treatments will almost certainly be as effective in the future as they would be now.

Ask questions, get a second opinion, take your time

We suggested he make a list of questions to take to his surgeon, including:

  • How large is the tumor?
  • Is there any evidence it has spread outside the thyroid gland?
  • Is active surveillance an option? If no, why not?
  • What tests are done with active surveillance? How often?
  • What are the possible complications of a thyroidectomy?
  • What is the recovery time?
  • How many of these procedures have you done?
  • What are the possible complications of the I-131 treatment?
  • How much do these treatments cost?

If he doesn’t feel his questions are answered, or he still feels uncomfortable or uninformed about his options, we advised him to get a second opinion.

We certainly wish we had!

Although my husband’s surgeon was very skilled, we also learned later that she was very aggressive. A less aggressive surgeon might have given us the option of active surveillance, and a chance for my husband to decide whether to proceed with further treatment or not.

Lastly, we told him not to rush into a decision. Papillary tumors are very slow growing. He has the luxury of time to gather information and then decide what is best for him.

Unfortunately, it’s very common for patients to hurry into surgery or other treatments before really understanding their options. Surgeons, too, can be pushy. Surgery is their bread-and-butter, and they have OR slots to fill. If a surgery is canceled, they will be eager to fill that time with another case.

Don’t be pushed into scheduling a surgery before you’re ready!

Take your time. After all, having your thyroid removed entirely is life-altering. It means taking a medication every day for the rest of your life.

And as my husband’s story shows, all medical treatments come with potential complications.

I wish I could turn back the clock and change things for my husband. I can’t.

But maybe we can prevent his brother from a similar fate.

Sláinte,

Frugal Nurse

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