Here are a few things I’ve learned this past year:
- I hate being a patient.
- Being a patient means being under heightened scrutiny for, like, forever.
- Patients who don’t want to follow the standard medical protocol find it difficult to get care.
Last year my primary care doctor felt a mass in my belly. “It’s probably nothing, but I’m going to send you for a CT scan right now,” she said. I had lymphoma. Part of my workup involved a PET scan, and my thyroid lit up. Lighting up is bad in PET-scan speak, and can indicate a cancer. I was told we would have to revisit this once I was done with the lymphoma treatment.
I am traumatized by my visit to Planet Cancer, even though I had a very slow-growing, very treatable sort. I did have chemo and a monoclonal antibody injected for two days every 28 days (“Like having your period, mom,” my daughter said) for five months, along with at least five other drugs to manage or prevent side effects.
I did smell like chemicals for over a week after each treatment and was told to use a separate toilet. I did have to have a central line inserted, so I had a needle with a plastic cap sticking out of my upper arm. (I was told to wrap it in Glad Wrap Press’n Seal for the shower, a product I had never heard of and for which I had to go to three stores to find.) I did lose 25 pounds.
Treatment was over, but the trauma was not. For the first three months after my treatment ended, all I can do is watch DVDs. I obsess over what happened, talking endlessly to my husband, a physician, about every angle I can think of. I completely change my diet because most of what I used to eat no longer appeals to me. I lose my sense of smell and taste. I change my ringtone because the ring itself makes me panic.
And yet, I was lucky: I didn’t lose my hair, I didn’t have any body parts removed, and best of all, the treatment worked.
I even skip out on my last treatment because I am already in remission after three months. And I am simply done with being a patient. Done.
My Stupid Thyroid
I tell my oncologist I will come in every four months, not three, and then I change my appointment so it’s almost five months by the time I see him again. My heart races and my armpits are drenched when I finally sit down in his office to talk about my stupid thyroid.
He sends me for a thyroid ultrasound and four nodules — essentially, lumps — are discovered. Thyroid nodules are incredibly common and, occasionally, cancerous.
I do what anyone in my situation would do: I turn to the Internet. I join a thyroid cancer online support group called "Inspire." It's kind of like Facebook, but only for people with the bad kind of thyroid nodules. Almost everyone on the site has had their thyroid surgically removed. Many of them have problems with the hormone replacement pills they must now take. A few of them are wary of surgery and want another option. I’m in that last camp.
And It Hurts
I am referred to an endocrinologist who performs a fine needle aspiration on two nodules to try and determine if they contain cancer cells. I learn that insurance doesn’t allow testing on more than two at a time and realize this makes sense in a bad news sort of way: If the test shows something bad after two tries, why look more? These needle aspirations sound harmless enough and are described as causing mild discomfort -- clearly by someone who has never had the procedure.
Even though she has injected me with lidocaine, a numbing agent, the doctor's digging around with the needle is extremely painful. My eyes well. She keeps telling me to relax my shoulders, which I realize are hunched up, probably in an effort to get away from that needle.
She digs around. Six times. In each nodule.
After a week, the doctor calls me to say the results are…inconclusive! I have what is called a "follicular lesion of undetermined significance."
It has a cute name: FLUS. She tells me I can get genetic testing, which will give me a better idea of whether the nodule is likely to be cancer. Sounds like a plan. But wait -- I have to have the awful needle aspiration procedure again. Apparently, the biopsy material can’t just be sent for genetic testing. It’s all used up. A new round of material is needed. More tears.
Then the report arrives: My 1.3-centimeter right nodule is "suspicious," which is defined as a 40 percent chance of malignancy. The endocrinologist has only one answer to all of my questions: You must have your thyroid taken out.
This is not acceptable to me. It’s not simply that I will not, I know I cannot return to Planet Cancer right now. I just left! My reaction is visceral. I feel nauseous and have trouble sleeping. Anxiety creeps into everything I do. I know I do not have the capacity to endure more procedures, a surgery and the months it would take to get the right thyroid hormone levels. I hate being a patient. And right now, I don’t have the emotional resiliency to be one.
I start researching and learn that the incidence of thyroid cancer has doubled over the past decade and patients are almost always counseled to have their thyroids removed and to receive radioactive iodine treatment, making them radioactive for awhile. This, for what is usually a very slow growing and non-life threatening cancer. I am struck by this disconnect.
Atul Gawande, the New Yorker writer and a thyroid surgeon, has written about this phenomenon. Gawande references a book by H. Gilbert Welch, a Dartmouth Medical School professor, who talks about the problem of cancer over-diagnosis and how not all cancers are fast running rabbits that need to be caught, but some are like turtles that were never going to hurt you anyway.
Surgery? No Thanks.
I want to find an endocrinologist who will agree to monitor my nodule, rather than insist that I get my thyroid out. Boston is a health care mecca. Surely there are doctors who are up on the latest watch-and-wait approach. It seems simple, but it’s not easy.
A surgeon colleague of my husband says I need surgery right away -- he does not recommend waiting even two months. My cousin, who had her thyroid out decades ago, asks, “Don’t you just want to get it taken care of?” My daughter wonders, “But is it safe to wait?” I ask my husband, the physician, what he would do. He punts and says he’s not sure.
I read a study out of Dartmouth Medical School that finds that most people survive thyroid cancer, regardless of whether they have their thyroid out. I email the investigator to see if she knows of anyone in the Boston area who would follow my nodule. She doesn’t, but gives me a name of someone who might. I make three different appointments -- one with the doctor who might, one with the surgeon I originally saw, and one with Atul Gawande himself.
I end up canceling them. I send all my records to a New York hospital, hoping to get into their clinical trial of watchful waiting, but am rejected. They give me the name of someone in Boston who is familiar with the watch-and-wait approach. This doctor I see.
I go into the appointment armed with a list of 30 questions and at least three solid arguments about why I shouldn’t have surgery. The doctor says he has some questions for me and wants to do an ultrasound and then I can ask as many questions as I’d like. After the ultrasound, he tells me that he is willing to follow me with ultrasounds every six months. If the nodule changes, he will likely recommend surgery. He hears what I am saying and says it’s important to get my life back, including my feeling of being a healthy person. He is pretty sure I have papillary thyroid cancer. This is important, because it is a type of thyroid cancer that, even when it spreads, does so only locally and is not life threatening.
I am initially stunned. I look at my husband, who over 20 years ago trained with this doctor who has become my new best friend. I ask some of my questions, my husband asks more. And then we leave. I practically fly out of the elevator. It is 3:30 p.m. and we go into the Liberty Hotel bar and order drinks. We are celebrating. I have regained some control in my life.
I have a reprieve.
I share my news with my online thyroid cancer buddies. I want to show them that there are options out there, including doctors who won’t immediately push you into surgery. I think I’m contributing to the conversation and offering a new perspective.
Within hours I have too many comments to count. I start to read them and stop. Instead of being supportive, which this site prides itself on, everyone is telling me I am crazy not to have a thyroidectomy. And I realize: They need to justify their choice by lambasting me for mine.
I turn off my "Inspire" email notifications and stop visiting the site.
A Measured Response
The following month, it is time for my regular oncologist appointment. I tell him that I am physically fine, but that being in his office makes me feel very anxious, that my one-year anniversary of being diagnosed is this month, and that I am still finding it hard. He tells me he wants to support me and understands how I feel and offers me a social worker. I tell him I need less time at the hospital, not more. I look at him and think: He badly needs Chapstick.
He says he has received the letter from my new endocrinologist and is glad we followed up on the nodules. I look at him and say that I wish we hadn’t. And then he tells me that he had a lymphoma patient who survived the lymphoma only to get thyroid cancer. And then died from the thyroid cancer.
This feels mean. He doesn’t need to push the issue. It’s not like I’m ignoring my nodule. Or not getting care. I’ve just chosen a more measured response, from someone with 40-plus years experience, at one of the premier hospitals in Boston.
So why does my oncologist feel like he needs to scare me?
And he does scare me. Even though I feel comfortable with my decision to have my stupid thyroid nodule followed, even though it feels rational and educated, even though I know that having surgery right now could send me over the emotional edge, his comment burns. It makes me wonder: Am I being stubborn and stupid just to make a point? Am I going to die from my stupidity? Will I leave my daughters without a mother?
My heart races. I practically run out of the room. I hate being a patient.