My Doctor Read My Results Wrong. Now I'm Missing Part of My Cervix.

How fear-mongering drove me into the arms of the wrong doctor

After I wrote about my adventures with going off anti-perspirant, I’ve been thinking a lot about that damn Gardasil shot I got in 2007. And the whole reason I got it in the first place. So I figured that would be the next “bad medicine” story to unpack here.

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So my tale begins in spring of 2007 in Boston.

I’d recently landed a job at a research facility in one of the top hospitals in the city. As a result, I had fantastic health insurance for the first time in my life. I figured I should take advantage of it since I was no longer a poor college student and restaurant worker. After all, I was making $12 an hour. That was big money.

The first appointment I made was with a primary care physician. I’d heard that annual checkups were important, so it was high time I had one.

He seemed like a friendly, competent doctor. He did all the usual stuff. Looked in my ears. Tapped my knee. Listened to my heart. He also offered to perform a pap smear and pelvic exam since I’d never had one.

I thought that was awesome. I would only have to pay one doctor for what two would normally do.

A Letter in the Mail

At the end of my appointment, the doctor explained that they’d follow up with results about a week later. What I hadn’t expected was for them to be printed on a single 8.5” x 11” sheet of paper and mailed to me.

At first glance, it just looked bloodwork. As I started to read through the page full of medical jargon and results that made very little sense to me, there were two points that bothered me. One had to do with my cholesterol and the other with squamous cells.

Cholesterol… Eh. That seemed like a nothing burger. (I’ll deal with cholesterol and statins another time.) But I knew the word “squamous” and it was always associated with cancer.

So I gave the doctor’s office a ring.

“Hey, uh, can I talk to the doctor about these results?”

No, of course not. I had to pay for another appointment and see him in person.

A Full-on Berating

The day of my visit, I wasn’t taken into the usual exam room. Come to think of it, this is the only time in my life I’ve been asked to go into an actual office of a doctor.

He sat behind his desk and asked me what this was all about. I remember being thrown off by how curt he sounded.

I pulled out the letter from my purse and handed it to him.

“I wanted to go through these test results with you,” I said.

He started to read from the top:

“Dear Suzanne Scacca…”

Literally word for word.

I interrupted him and explained that I really just wanted to talk about the result that mentioned squamous cells.

He read that line out loud. He then dropped the paper on the desk and gave me an angry look. That time I was positive I had done something wrong because he looked downright angry.

I asked, “So what does it mean? I’ve heard of squamous cell carcinoma. Is it related?”

He responded, “You know, it was irresponsible what you did. You let me examine you and you didn’t tell me you had an STD.”

Back in health class in high school, we learned about two things: STDs and birth control methods. We never actually talked about the act of sex, just all the stuff around it.

So while I didn’t know shit about sex when I first started having it, I was well-versed in STDs and had a too-healthy fear of them. I can thank my health classes and my nearly 10 years of CCD (basically, a weekend class that Catholics attended) for that.

I just couldn’t believe what the doctor had said. How could I have an STD?

I wanted to know which one.

“This is ridiculous. You know you have an STD and then come in here pretending like you don’t. Do you know what you’ve done?”

I asked him to humor me and act like I was hearing this for the first time. (I was.) Could he just tell me which STD it was and what I had to do next?

“You have HPV.”

HPV. My brain ran through all of the STDs I was taught about in school in the ‘90s. Gonorrhea. Chlamydia. Herpes. Syphilis. Genital Warts. HIV. What the hell? There was no HPV on that list. Did he actually say HIV and I just misheard him?

Nope. I had HPV. They just never referred to genital warts as HPV back in the day. Nor did they explain what the non-wart-y kind of HPV was. I’m not sure why. I didn’t think to ask. I just wanted to know how to get rid of it.

The doctor explained that I had to see a gynecology specialist because I had the kind that causes cancer. Not that it could cause cancer. That it does cause cancer.

“Everyone Gets It”

I called the specialist he referred me to the second I stepped outside the office. Holding back the tears, I explained that I have cancer-causing HPV and need to see someone. For what, I wasn’t sure.

The receptionist made me an appointment for the next day. Apparently, it was that urgent.

Except it wasn’t.

The specialist was a bubbly middle-aged woman. I explained to her what happened with the doctor, including the berating.

She said that was strange considering I hadn’t put anyone at risk of anything. Even I had nothing to worry about (probably). Apparently, “everyone gets it” so long as they or their partner has had sex with someone else at some point.

To be more accurate, she said that about 75% of people will have gotten some strain of HPV over the course of their life and most never know about it. For one, because men can’t be tested for it. Also, because it usually disappears months after you catch it. Only people who get one of the pesky types that sticks around, manifests as warts, or develops into cancer are the ones who know about it.

She put me at ease with that.

The ease only lasted about a heartbeat. She explained that because I had “high-risk HPV” (i.e. one of the strains that can cause cervical cancer), I needed to have a biopsy done. I was not to worry though. The procedure was quick and basically painless. She just needed to take some tissue samples to see if I’d developed pre-cancerous cells.

I was so eager to be done and over with it. I jumped up on the table, put my feet in the stirrups, and let her do her worst.

She was right. It wasn’t awful. It was like a pap smear with some extra pinching and a tiny bit of bleeding.

I hopped on the bus and headed home to Brookline. Unlike the night before where I spent most of it crying, I felt assured that I was fine and that my doctor had just been a mean prick.

A couple hours later, I received a call from the specialist’s office, which was unexpected because she said they’d get the results to me in a few days. My stomach dropped. Before the assistant said anything, I knew it was going to be bad.

The Loop Electrosurgical Excision Procedure

My cervix had pre-cancerous cells and they had spread to an area that made the specialist very nervous. So her office scheduled me for something called a LEEP (Loop Electrosurgical Excision Procedure).

It wasn’t until I was back on her examination table and waiting for the numbing agent to work that I received an explanation of what a LEEP is.

The only problem was that I was having a nasty reaction to the numbing agent and my heart was going crazy. Fluttering. Stopping. Racing. Slowing. And pain like you wouldn’t believe. This is unfortunately quite common with my heart when I take certain medications. But at the time, this was all new to me and I was panicking and couldn’t focus on what she was saying.

The specialist thought I was just being overdramatic and proceeded with the procedure while I clutched at my chest and bawled my eyes out.

To make matters worse, the numbing agent didn’t really numb much. So yeah, I felt the “loop”, which is basically an electrified wire that the doctor uses to remove suspicious cervical tissue. You wanna talk pain. Oof.

I just told myself the pain of a wire burning off tissue inside me would be nothing compared to the pain of having cancer raging through my lady bits. So I gripped the edges of the table and hoped it would be over soon.

“Oops!”

The procedure itself didn’t take too long. The recovery, however, was five excruciating weeks.

Because they burn off pieces of your cervix, it takes awhile to heal. And the stuff that sloughs off from the burnt and healing areas is nasty and smells even worse. I’ll spare you the details.

Anywho, five weeks later I had my follow up appointment with the specialist. She opens my patient folder and her furrows her eyebrows.

“Hmmm… Looks like we didn’t have to do the LEEP after all.”

Wait, what? As with the first doctor I saw, I was sure I had misheard her, so I asked her to explain.

“You never had any cancerous cells. Oops!” She laughed as if she’d mispronounced my last name in a silly way.

Wait, WHAT??? I just couldn’t understand what she was saying to me. I asked, “Did I even have HPV?”

“Oh yeah, your original test was positive for high-risk HPV. However, I must have read your biopsy results wrong because there were no cancerous lesions.”

I wanted to know what that meant. Did I have HPV anymore? What about my burnt cervix? And would I eventually get cancer if the HPV didn’t go away?

Her answers were as follows:

• “I don’t know. You need to get tested again in six months.”

• “You won’t even notice the missing parts of your cervix. Except it’ll make it easier for you to have kids, so there’s a bright side!”

• “You might develop cancer, which is why it’s important you get the HPV vaccine.”

I wanted nothing to do with my primary care doctor, so the specialist suggested I go to Planned Parenthood for the STD test and vaccine.

Using Fear to Push a Vaccine

I ended up testing negative for HPV on that next visit and getting my first of the two Gardasil shots I went on to get. And, of course, I had a terrible reaction to it that lasted about a week.

I remember the doctor at Planned Parenthood explaining that, because I’d already been infected, it was critical that I get the vaccine. I couldn’t risk having another bout with that STD.

But I wanted to know why. If I didn’t even know that I had it, if men can’t be tested for it, if condoms can’t protect you from it, did I really need to worry about it? And after all that I went through with the LEEP I didn’t fucking need, I wasn’t even sure if I needed STD testing if it was going to put me in more harm’s way than the HPV disease actually caused.

The doctor was not happy that I said any of that. She told me that cancer is no laughing matter and that the vaccine protected sexually active people like myself from getting it. Now why wouldn’t I want to be responsible and protect myself (and my partners too) from getting avoidable cancers?

Cancer is pretty prevalent in my family, so the thought of getting the big-C from sex did scare me. I also didn’t want to become a sexual pariah.

It wasn’t until my second appointment that I learned that the so-called vaccine only prevented two types of high-risk HPV. “But they’re the most common!”, the woman who had just given me the shot exclaimed.

So out of the more than 100 strains of HPV, this one would protect me against… two. Cool, cool.

What’s worse is that I worry that the vaccine has messed with my hormones (see previous post). I obviously can’t confirm that, though I can say without a doubt that these issues didn’t begin until I took those shots.

I mean, who knows? My body could be messed up from all the chemicals I’ve put on and in it over the years. But I do occasionally think back to that time, compare it to what we’re seeing now with the COVID shots, and wonder if perhaps Gardasil has had a role to play in it. And those of us affected will never know because the vaccine makers and doctors can always blame it on something else.

Final Thoughts

I look back on this experience and get so mad at 24-year-old Suzanne. I’d always been such an inquisitive and skeptical person, to the point of it getting me in a lot of trouble in school, at church, and at home.

I gave all that up and put my complete faith in doctor after doctor who failed me. And I didn’t have the confidence to stand up to them or walk away because I so badly wanted to be able to trust someone to care for me.

One thing I will say is this: I’m super grateful that COVID didn’t happen back then. I had a healthy distrust for the government at the time, but not for the medical community. I worry I would’ve been too young and insecure to have withstood the pressure and fear campaigns inflicted upon us during COVID.