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The Reality of My 'Good' Papillary Thyroid Cancer Diagnosis

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You may be wondering about the title of this article. Is it because I had a positive outcome and am cured of my cancer? Yes.

Is it because I had great doctors, nurses, clinical professionals and other medical staff handling my case? Yes.

Is it because I had an early diagnosis and smooth treatment process? Yes.

Is it because I had a good experience or good type of cancer? No.

Many people told me, “If I had to get cancer, thyroid cancer was the best kind I could get.” While I appreciate the well-intentioned friends, family and clinicians who said this to me, they could not be more wrong.

Cancer, of any type, is nothing short of torture. The words, “You have cancer,” are some of the hardest words to hear. Even if you are reassured you will be OK, you will never mentally or emotionally recover from the diagnosis of cancer.

Maybe in 20 years from now my outlook will be different, but for now, I wholeheartedly believe there is no emotional recovery from a cancer diagnosis. Even a “good” one.

Well, let’s talk about how my journey started. It started in 2014 when I was a sophomore in college. I went to bed after having a glass of wine with my roommates. I was laughing, joking around and happy. I called it an early night because I was tired and my neck was a little stiff.

Fast forward to 2:30 a.m. when I awoke with 103 degree fever, unable to speak, barely able to move and unable to stand up straight. I went straight to the emergency room (by myself) and was given an IV of fluids and a prescription for ibuprofen and told to wait out the virus.

Over the next 24 hours my condition worsened. I couldn’t speak at all, I couldn’t brush my teeth without crying and I could barely move. My mom took me to a different emergency room where I stayed overnight and was given an intensive dose of steroids and antibiotics intravenously. However, I left the following afternoon without a diagnosis. I left without answers, only a referral to an ENT (otolaryngologist).

I was very familiar with the ENT office. I had grown up with severe sinus problems and had already had my tonsils and adenoids removed, tubes in my ears, sinuses drained, polyps removed and a deviated septum fixed.

When I saw my ENT, he took one look at me and knew immediately I had “lingual tonsil hypertrophy.” This diagnosis stunned me because at the time, I didn’t even know what lingual tonsils were, and I had already had my tonsils removed, so how were they causing problems now?

Well, I learned there are three sets of “tonsils” in the body: the traditional palatine tonsils everyone talks about when referring to tonsils, the adenoids and the lingual tonsils.

Lingual tonsils are made from tissue from the lymphatic system; they rest on the base of one’s tongue and are usually never a problem for most people. However, mine were extremely enlarged, infected and blocking my airway. My doctor said they would never return to normal size because once they become enlarged they don’t have the ability to drain like regular tonsillar tissue. So I signed up for surgery and the enlarged tissue was removed.

It was 30 days after the surgery, and something was wrong. The doctor said the tissue had returned. I signed up for surgery number two. The tissue was again removed. In the months following surgery number two, I noticed a lump in my neck. I was panicked the tissue had again regrown, and I would need surgery number three.

When I returned to my doctor he said the tissue had not returned. (Sigh of relief). However, he wanted me to see another doctor in the practice after I got an ultrasound of my neck. He didn’t like the lump I felt. At the time I thought this was a strange request. But I complied.

While waiting for my appointment with the other ENT, I was anxious for the esults of the ultrasound. And in my infinite wisdom as an undergraduate speech-pathology student, I thought I could interpret a radiology report. So, I went to the imaging center and requested a copy of my radiology report.

*Cue the tears.*

I had diagnosed myself with cancer. Based on Google and the findings of the radiology report, which read “thyroid nodule with microcalcifications,” I was nothing short of certain this was cancer.

To my surprise (and my mother’s delight), at the new ENT appointment the doctor said I did not have cancer and my nodule was only 2 mm — nothing to worry about, even remotely.

I was not convinced. I told him I thought this was something.  I was still having trouble swallowing and my throat hurt. It had to be significant. The doctor proceeded to call me foolish (in a sugar-coated, not-so-loving way). I was dismissed and told he would follow up with ultrasounds annually.

Every year from 2014-2016 I would go to my annual neck ultrasound and again, be dismissed and told I was fine. Finally in 2017, four years after my initial ultrasound and after four years of being told repeatedly, “You’re fine,” I almost declined my annual ultrasound. In my mind I was ruled out for cancer.

The annual results were the same from year to year. Why waste my time? Well, the ultrasounds don’t hurt and the imaging center isn’t too far from my house, so I thought I would go and just make this my last one.

A few days after my ultrasound I got a call from a PA who told me the nodule grew “significantly” and I needed a biopsy.

Woah. Slow down. Biopsy. Nodule growth. This was all foreign to me. The PA could hear my panic and stated it was routine and less than one percent of nodules are cancerous so I shouldn’t worry. Just standard procedure.

So, I prepared for my biopsy. My mom was working and wasn’t very concerned because, like me, she thought there was no possible way for me to have cancer. The doctor already ruled out and told me I was fine… four years ago. So instead, I took my boyfriend to the appointment.

I was more apprehensive about the procedure itself than the results. I kept saying it was stupid for me to be there, it wasn’t cancer and it was just an unnecessary procedure. My boyfriend tried to reassure me it would be helpful to just get it done. I begged to differ because he wasn’t the one getting a needle probed into his neck. When it was time for the biopsy to start, they told me my boyfriend would not be allowed in the room. I panicked. I went out into the waiting room where my boyfriend was patiently waiting and broke down crying. I told him “I do not have cancer. I’m not doing this without you. Let’s go.”

Looking back on this moment I couldn’t be more thankful my boyfriend had a very level head and knows me well enough to know with a little support, he can push me to do the right thing. So he spoke to the office staff and informed them  I was ready to run and would do so, unless he was allowed to hold my hand. The office staff was not pleased; however, they conceited because a calm, present patient was much better than what I would have been.

The biopsy was painful but I survived. Again I found myself waiting for results. The impatient personality I have, coupled with my new masters degree in speech-pathology, made me think I could again, pick-up my radiology report with the biopsy results (prior to discussing the results with my doctor) and this time I would interpret it correctly.

I was fully expecting to see “benign” written on the report. Instead, in the parking lot of the imaging center by myself, I opened an envelope that said, “Suspicious for malignancy.” My heart dropped, panic set-in, followed by confusion, followed by tears.

I called my mom. I called my boyfriend. They both said the same thing. I was silly for going to get the report and I shouldn’t panic before I see the doctor. It’ s probably nothing, just like it was last time.

Thankfully, the doctor who told me I was foolish in 2014, had left the practice. A new doctor had taken his place. He was lovely, well-spoken and kind. He gently told me my results did indicate suspicious cells that had a high likelihood of malignancy. However, he reassured me this was not an aggressive cancer and I could sign up for the wait and watch protocol, which would involve an ultrasound every three months until the cancer grew large enough to take out or plateaued and stopped growing.

Or, I could opt for surgery right away. I agreed to sign up for the wait and watch protocol until I could think about my options more.

My mom (being a mother, a saint, and the type-A personality she is) was not convinced. She was worried for my health and wanted a second opinion. So I was then sent to another hospital, despite my resistance. I was convinced I was fine. This probably wasn’t cancer. There was a 30 percent chance this wasn’t cancer. And even if it was, the doctor said I was fine. So why go to a cancer center? I’m not sick enough to go to a cancer center, I thought.

My mom disagreed, so off we went to another cancer center. Thank goodness for moms, especially mine. She is amazing, and even if I didn’t see it at the time, somehow she’s always right (with everything). And my journey never would have been the same without her.

I met with the doctor, who had requested all of my reports from the other doctor, and also requested the actual pathology slides so the center could review them. The doctor was lovely, kind and reassuring I would be OK, and whatever option I chose, I was in good hands. He said the pathology slides were still under review but they almost never disagree with the pathology findings from my previous doctor’s office, so I shouldn’t worry. He offered me the same options as the other doctor: watch and wait or a hemithyroidectomy.

Given my impending enrollment in a full-time PhD program at Columbia University, I wanted to take care of surgery sooner, rather than later. So I made the decision to opt for surgery.

That night I got a call from the doctor’s office, but I was on a ferry on my way to Fire Island, so I missed the call. When I got off the ferry I had a voicemail saying I needed to call the office back first thing Monday morning. But the office was closed for the weekend.

To say my fourth of July weekend was ruined is an understatement. I couldn’t help but obsess over what the office wanted and why they were calling me.

Fast forward to Monday. I called the office and was informed the pathology results were in and this hospital had disagreed with the initial results from the other hospital. Something the doctor said “almost never happens.” Well, of course it would happen to me.

The answer was a repeat biopsy.

My mom took me into the city for my second biopsy. It was one of the most painful procedures I had endured up to this point in my life. I wasn’t given any sedatives or numbing cream. Just a hand to hold and the reassurance it would be over quickly. Four needle passes later and lots of tears from my end, the biopsy was over.

Again, I found myself waiting for results. Something I had become accustomed to by this point in my journey. However, this time I learned my lesson and waited patiently for my results. The new results came in and I was confirmed to have malignant papillary thyroid carcinoma with 99 percent certainty. The highest degree of certainty awarded to specimens collected via fine-needle biopsy.

Well, good thing I scheduled that surgery already, right?

On August 23rd, 2017 I went to the new cancer center to have half of my thyroid removed. I signed a consent form indicating I was OK with the doctor taking out my whole thyroid if he noticed the cancer had spread while in the operating room.

I came out of surgery in pain, but relieved to hear my mom say he saved half of my thyroid and everything went well. So, I still had half of my thyroid.

The doctor had previously mentioned the likelihood I would need to take thyroid hormone replacement pills every day for the rest of my life was 100 percent if he did a total thyroidectomy but only 30 percent if he did a hemithyroidectomy. These odds were good.

I wouldn’t say I was comfortable with the odds and I was tired of hearing percentages, but nonetheless, I would rather take my chances with 30 percent odds rather than know 100 percent I didn’t have a chance of living without the medication. So, I let this go for now and focused on recovering.

The first two weeks of recovery were frustrating. I spent a lot of time in bed, uncomfortable or in pain. I couldn’t do anything. I tried to go to a wedding for my friends three days post-op. I barely made it through the ceremony and left before the reception.

I was frustrated at myself for not being able to do anything except lay in bed. But I tried to be a good patient. Two weeks later on September 5, I started my PhD program. I got a clean bill of health from my surgeon and was told I was cancer-free.

I had indeed, had papillary thyroid cancer with two spots of cancer in the left side of my thyroid. But it was all gone now, and I shouldn’t have problems ever again. I need continued monitoring to check my hormone levels, but the levels take time to figure out, so currently I am waiting until mid-October to get some blood work.

So, what did I learn from my “good” cancer story?”

There’s no such thing as “good” cancer.

I had so much anxiety waiting for results and trying to navigate the decision-making process when given percentages to work with instead of clear-cut answers.

It was nothing short of miserable for a solid four months.

And the surgery was no walk in the park. Staying overnight in the hospital, coupled with the pain and frustration post-operatively, was not good.

To say I have a “good” cancer story needs to be taken into context. I am so happy and thankful for the amazing support I received from friends, family, doctors, nurses and medical staff during my time.

Cancer isn’t an easy word to hear, but my diagnosis and journey was made a little better, thanks to all of the individuals who supported me. My journey is still not over, but I hope my story can reassure someone else there aren’t many clear-cut answers, and it’s OK to be anxious.

There is no “good” cancer. But, keep in mind the high-survival rate and think about my story, and hopefully one day you, too, can be cancer-free.

Yes, this is a life-changing diagnosis, but it doesn’t have to be a lifelong sentence, at least physically. So hang in there and be a thyroid cancer warrior and one day, hopefully you will be a thyroid cancer survivor.

Lilly Barone Thyroid Cancer Awareness

My best wishes to all who are fighting and all those who have fought any type of cancer, especially thyroid cancer. Please help raise awareness for others and spread the word to check your neck.

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Originally published: September 13, 2017
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