Should I have kept my cancer?
In 2011, CBC Arts producer Lise Hosein was diagnosed with thyroid cancer
I kind of wish I still had cancer.
I'm well aware of the inflammatory (and insensitive) nature of that statement: it shocks me too. But let me tell you why I'm saying it here.
In January of 2011, I was diagnosed with probable papillary carcinoma, i.e. thyroid cancer. It was terrifying just hearing the word in reference to my own body. A few months later, my thyroid was removed and biopsied.
The first year after surgery was rough. I had a complication during my operation that led to hypocalcemia, dangerously low levels of calcium in the blood. That can cause something called tetany. Symptoms include painful muscle spasms, intense cramping and, if it gets really bad, seizures.
For me, my hands actually started contorting and changing shape. It felt like what I would imagine it feels like to go into rigor mortis when you're awake. My perception was also affected: I had trouble understanding what people were saying to me for the first couple of days, and I felt an acute sensation of fear.
I felt this deep, dark depression.- Lise Hosein
To raise your calcium levels, you bombard your body with it — up to 28 grams a day by IV or drinking calcium seltzer tablets. Once your glands kick back in, your calcium levels may surge, creating another round of dramatic and scary symptoms. The doctors call it, "Bones, stones, moans and groans." For me, this all took several months to normalize.
But I was still sick. I was tired. I felt this deep, dark depression, and I couldn't figure out where it came from. Was it, as my doctors were saying, just an emotional reaction to the experience? It didn't feel like it.
Finally, my endocrinologist noticed my knuckles were swollen. Based on that observation, she did more blood work and deduced that my body wasn't using the standard levothyroxine medication — the one that every thyroidectomy patient must take for life — the way it should.
Within 72 hours of being prescribed a different medication, I felt exponentially better. I've done pretty well ever since — that is, until two years ago, when my body began once again having an unsatisfactory relationship with my meds. Or, perhaps, to not having a thyroid at all.
What this means is, I tend to get simultaneous symptoms of hyperthyroidism (excessive production of thyroid hormones) and, more often, hypothyroidism (not enough thyroid hormones).
Doctors are realizing, over time, that there are many thyroidectomy patients who may never recover their pre-surgery quality of life. That may be true for me.
Alternative to surgery
Now, new research suggests that perhaps my surgery may not have been necessary at all.
Researchers are finding evidence that it's not beneficial to remove all thyroid cancers. It turns out active surveillance could be an alternative to surgery for patients with papillary thyroid cancer less than one centimetre in diameter without evidence of spreading to other organs or tissue.
With it, patients could forego surgery, keep their cancer in their body, and be closely monitored for any progression or growth.
It sounds counterintuitive, but by retaining their thyroid, patients avoid medication and many of the potential complications of surgery. And at any point, they can change their mind and have a thyroidectomy after all.
How effective is active surveillance? A meta-analysis published in Surgery in January 2020 is encouraging. Using data from Japan, South Korea and the United States, researchers found that almost no one died who was enrolled in a supervised active-surveillance program for thyroid cancer. For the study group, mortality due to thyroid cancer was 0.03 per cent.
"Active surveillance appears to be a safe alternative to surgery for the management of low-risk papillary thyroid carcinoma, without increased risk of recurrence or death. This strategy allows for avoidance of exposure to surgical risk and need for subsequent thyroid replacement surgery," the study concluded.
Other published research studies have yielded comparable results.
'Not the right choice for everyone'
Here in Canada, the only current program for active surveillance of papillary thyroid cancer is through the University Health Network in Toronto. It's run by co-primary investigators Dr. Anna Sawka and Dr. David Goldstein.
"What we're offering is not necessarily pushing active surveillance versus surgery because some patients may not feel comfortable with active surveillance and knowing that they're living with a cancer. And so this is not the right choice for everyone," said Dr. Sawka, an endocrinologist and clinician scientist at UHN.
Patients are "actively given a choice," added Dr. Sawka, and not necessarily told that they must have a thyroidectomy if they go for regular checkups.
"So it's not about pushing one specific strategy — it's about giving people a choice and having patients more actively involved in that choice. But giving people a choice is a change compared to the way things used to be."
These active surveillance programs signal a sea change in how we treat papillary thyroid cancer. This year, according to the Canadian Cancer Society, an estimated 8,200 Canadians will be diagnosed with thyroid cancer. Now, some of them will have a choice whether or not to operate.
To be clear, papillary thyroid cancer is only one form of the disease: other forms are more aggressive and carry far more risk. But should you be one of the many to be diagnosed in 2020, know that active surveillance programs do exist.
Some doctors may not like or even want to have a conversation about keeping your thyroid, but you do have the right to ask questions.
Knowing that this was not an option when you were being treated, it really doesn't change anything for you.- Dr. Anna Sawka
Dr. Sawka suggests that you ask your doctor the following questions: "Do I really need this biopsy? Do I really need this operation? How will this benefit me? What is the evidence for this? And do I have any other options?"
And if you, like me, had a thyroidectomy last month or long ago, you may be wishing that you still had your thyroid.
But Dr. Sawka cautions me against regret, saying, "Knowing that this was not an option when you were being treated, it really doesn't change anything for you. Would that stir up some complicated emotions for you?"
Yes, the emotions are complicated. And 2011-me was horrified by the word cancer.
In the midst of my fear, I can't know now whether I would have made the decision to go for active surveillance.
But Dr. Sawka said one thing to me that I think I will act on.
"What may be more helpful is sometimes patients are supports for other individuals. And so, if they are involved in supporting thyroid cancer patients who are going through this, being honest about their experience, positive or negative, that may be helpful.
"And if there is a study that one is aware of what that other person may benefit from knowing about, let them know about it."
So here. Maybe I don't wish that I still had cancer. Maybe I'm just glad that I get to let you know.
Produced by Lise Hosein and Jeff Goodes.