After I Was Diagnosed With Cervical Cancer, My First Reaction Was Shame

Last year, at age 35, I was diagnosed with cervical cancer after a routine Pap test came back with abnormal results. As might be expected, I felt terrified when I received the news, my doctor’s hands gripping my knees through the sheet across my lap. She assured me that we’d caught the cancer early and that it was highly treatable. Still, I found myself unable to sleep while I awaited additional test results, imagining a near future where I might no longer exist.

There was another feeling, too, one I would never have expected to go along with a cancer diagnosis. That feeling was shame. Cervical cancer is almost exclusively caused by a common sexually transmitted infection (STI) called human papillomavirus (HPV) and your risk of contraction increases with your number of sexual partners. A highly effective HPV vaccine exists, but by the time my family doctor mentioned it to me when I was 28, I mistakenly assumed it was too late for me to benefit. I went on to sleep around with abandon, enjoying my time as a single twentysomething. With my diagnosis seven years later, I suddenly grasped what a terrible mistake I’d made. I should have slept with fewer men, I thought. I’m a whore and this cancer is my fault.

I soon discovered that many women with cervical cancer feel exactly the same way—even though HPV is incredibly common. Cervical cancer is the third most diagnosed cancer in women ages 25 to 44. According to the Canadian Cancer Society, around 1,550 Canadian women are diagnosed with cervical cancer each year, and 400 will die from it. Those numbers represent just a fraction of the people who actually contract HPV: at least 75 percent of sexually active people. If the shame that women feel is going to change, we need to start speaking openly about HPV, and properly educate our healthcare providers, teachers and policy makers about the importance of sexual health literacy. 

When Rachel Brown was diagnosed with cervical cancer at age 39, her doctor said it was caused by having “a lot of different sexual partners” even though she knew nothing of Brown’s sexual history. A married mother of two pre-teens in Mississauga, Ont., Brown started to spiral. What did I do? she thought. I should never have had sex with anybody. Even when she learned that her doctor wasn’t correct—cervical cancer doesn't only happen when women have many sexual partners, though having more partners does increase the risk—“that initial reaction stayed with me,” she says. 

Tiffany Blake of Fort McMurray, Alta., who was diagnosed at age 44, had a more compassionate response from her healthcare practitioners. But when she realized her cancer was caused by HPV, she still felt like she needed to justify her sexual activity. I'm allowed to enjoy sex, she thought. I'm a professional. I contribute to society. I've raised good children. I spend time with my mom and dad. I volunteer. Yet she feared people would treat her like “the company slut.” 

After talking to women like Brown and Blake, and discovering that I wasn’t the only woman with cervical cancer who was hurling insults at herself, I felt my shame transform into anger. We have cancer—why should we feel bad about ourselves, too?

The answer is: We shouldn’t. “One of my nursing colleagues who is a very important thought leader in this area describes HPV as ‘the common cold of the vagina,’” says Dr. Gina Ogilvie, a professor at the University of British Columbia and a Canada Research Chair in Global Control of HPV-Related Diseases and Cancer. “We know that about 80 to 85 percent of females at some time in their life will have HPV.” There are fewer studies with men, even though HPV can also cause penile, anal and oropharyngeal cancers (the latter refers to cancer of the oropharynx, which includes the back third of the tongue, as well as the tonsils, soft palate and the sides and back of the throat). However, Ogilvie notes that “we did a study in an STI clinic and about 60 percent of males at any one time had HPV on their penis, scrotum or glands.” Condom use reduces the risk of transfer, but it isn’t 100 percent effective because the condom only covers the shaft of the penis.

HPV is also a very “clever” virus, according to Ogilvie, in that it lives in the external tissues, like the epithelium of the cervix, so it doesn’t come in contact with the immune system. “That means we don’t always develop an antibody response to an HPV infection,” says Ogilvie. “People can be infected and not develop any immune response. They can also acquire different types.” Of the more than 200 strains of HPV, only a small number have negative consequences. Some low-risk strains can cause genital warts, while more than a dozen high-risk strains can cause cancer. 

Most of the time, HPV is symptomless and our bodies will clear the infection (which is one reason why so many people can have HPV without knowing it). But in about 10 percent of cases, cervical HPV infections will linger and can cause cellular changes that, over one or two decades, become cancer. Whether or not your body will be able to eradicate the infection is more or less down to luck, though there are risk factors for long-standing infections including smoking, giving birth multiple times, using oral contraceptives or having another STI like chlamydia or HIV. Women with lower incomes and education are also at a greater risk of eventually developing cervical cancer after an HPV infection, possibly because they aren’t going for regular Pap tests. 

The consequences of an ongoing HPV infection can be dire, which is why using condoms and getting vaccinated is crucial. Gardasil 9 is the best form of prevention when administered before becoming sexually active; it’s recommended for girls and women between the ages of nine and 26. Health Canada notes that peak risk for HPV infection is within five to 10 years of one’s first sexual experience. However, a secondary peak occurs in women aged 45 and older, and the risk of getting HPV later in life could be mitigated by getting vaccinated as an adult. In other words, even if you’re older than 26, it’s not too late to get it. In fact, the Canadian Cancer Society recommends that girls and women aged nine to 45 get the HPV vaccine.

Acquiring HPV is not something to be ashamed of. No matter who you are, it’s likely that you’ll get an HPV infection at some point in your life—and you may never even know it; routine STI tests do not check for the presence of HPV. Yet, shame is a perfectly reasonable reaction in a world where publicly discussing sexuality—a very normal and important part of life—is seen as vulgar or inappropriate. 

“This stigma is woven into our culture, which has a dominant Judeo-Christian ethos,” says Frederique Chabot, acting executive director at Toronto-based Action Canada for Sexual Health and Rights, a charitable organization that advocates for sexual and reproductive health and rights at the provincial, national and global levels. “There’s a taboo around sex and it’s a barrier to healthcare. We come from a system that has not prioritized comprehensive sexuality education, so most of us don’t have the tools to make decisions about our health, to advocate for ourselves at the doctor’s office or even to have healthy sexual relationships.”

Doctors, like Brown’s, may struggle to speak about sexual health in a way that is unbiased, compassionate and informative. In Canada’s 17 medical schools, “sexual health, women’s health and trans health are areas that have been siloed as marginal or not as core to medicine,” Chabot says. “And there’s very little space and resources available given to healthcare providers to increase their comfort around asking the right questions, understanding bias, understanding what tests they need to offer to people and even understanding how sexual health interacts with mental wellness or other considerations that people have in their lives.”

As a society, we do not have the tools to navigate conversations about sexual health, and this knowledge gap has very real consequences. “Our screening rates in Canada are good, certainly better than many other parts of the world, but they could be a lot better,” says Dr. Aisha Lofters, a scientist and family physician at Women’s College Hospital in Toronto. “But there’s a lack of awareness: What does it mean to be screened for cervical cancer? What is cervical cancer? What is HPV? There are misconceptions about who is susceptible. It’s anyone with a cervix who has ever been sexually active. Even if you’re married, you still need to be screened. Even if you’re postmenopausal, you need to be screened.” Getting the HPV vaccine does not replace the need for Pap testing.

Though the Pap looks for precancerous changes on the cervix that are caused by HPV, many people have no idea that HPV causes most cervical cancers—almost every single person I tell about my diagnosis asks if cervical cancer runs in my family. If people don’t know the connection between HPV and cervical cancer, how can they make educated choices around vaccination, condom use and Pap testing? 

The test itself can also be a barrier that can be difficult to overcome without education. That’s because it can be physically uncomfortable or even emotionally traumatizing. For Katie McBride*, an Albertan who has battled uterine and ovarian cancers with her first diagnosis coming when she was 38, going to the doctor for any type of internal exam felt like an impossible task. She grew up in a home where no one ever spoke about sex or sexual health, and the idea of being prodded on a doctor’s table filled her with shame. “I didn't go until it was too late,” she says. “Even now, I cannot deal with the tests. It’s awkward. You're lying there with no pants. Your legs are up. They're digging around in there. Honestly, my biggest shame is from getting the testing done. And that's partly why I never got checked.”

Getting a cervical swab is never enjoyable, but the good news is you may soon need to get them less frequently. Canada's cervical cancer screening protocol is moving from Pap testing every three years to HPV testing every five years, which is a more accurate way of testing the cells gathered by the swab. Rather than looking for abnormal cells, an HPV test detects the presence of certain high-risk HPV strains; and anyone who is positive will be sent for further testing. Prince Edward Island has already made the switch, Quebec is in the process of doing so, and, as of January 29, individuals in B.C. will be able to order a self-collection kit, which would alleviate the need to get to a doctor’s office for preliminary screening (though Pap tests will still be available). Ontario’s Ministry of Health says it’s working toward a “multi-year transition” to include HPV testing as part of the province’s cervical cancer screening program.

As we all know, the cancer stage at which you’re diagnosed has a huge impact on your prognosis. Cervical cancer that is caught at stage 1A has a five-year survival rate of 93 percent, according to the Canadian Cancer Society. “If you're diagnosed at an early stage, the treatment approach is different [than for an advanced stage],” says Dr. Stéphanie Lheureux, site lead, gynecologic oncology and clinician investigator at Princess Margaret Cancer Centre in Toronto. At stage 4B, the five-year survival rate is only 15 percent. “That’s why screening is so important.” 

Take me as an example. I ended up being diagnosed with stage 1A1 cervical cancer, the earliest stage recognized by the FIGO system (the commonly used cancer-staging method created by the International Federation of Gynecology and Obstetrics). That means that not only did a routine Pap test save my life but, to date, I have been able to keep my uterus and avoid chemo and radiation. Instead, I’ve had two minor surgeries, called loop electrosurgical excision procedures (LEEPs), which removed around one centimetre of my cervix each time. I count myself lucky that my mom encouraged me to book regular Pap tests, even though she had no idea they were screening for cellular changes caused by HPV.

Though Pap testing ultimately worked for me, I do feel the Canadian healthcare system failed me when it comes to vaccination. The primary HPV vaccine we use in Canada, Gardasil 9, is highly effective at preventing nine subtypes of HPV—including types 16 and 18, which cause at least 70 percent of cervical cancers. “We have data that it prevents pre-cancerous lesions for vaginal, vulvar, cervical and anal cancers, as well as genital warts,” says Ogilvie. “We also anticipate that it will prove beneficial for preventing oropharyngeal HPV-related cancers.” 

In-school vaccinations have been happening across Canada since 2017, for both girls and boys. Today, provincially covered immunization usually happens between grades four and seven, and there are also catch-up programs for students who missed out because of pandemic school closures. The vaccine is administered in two to three doses over the course of a year.

In Ontario, free catch-up immunization is available through grade 12 and for men under age 27 who sleep with men. However, recent uptake levels in that province are low; as of August 2022, only around 23 percent of grade 10 students and less than 37 percent of grade 11 students had completed the vaccine series. Ontario’s HPV Immunization Task Force is calling for urgent action to improve vaccine awareness, noting that current levels “leave thousands of Ontario children… at risk of HPV-related cancer as they grow older.”

And what about people like me who are too old for school-based vaccination? I wasn’t offered Gardasil until I was 28, when my family doctor discovered that I’d ended an eight-year relationship. Perhaps if I’d agreed to the vaccine, I wouldn’t have developed cervical cancer. But at the time, I thought there was just one strain of HPV and, because I’d heard HPV was so common, I figured I already had it. I had no idea that some strains can cause cervical cancer, nor that there was a vaccine that could prevent this from happening. “Vaccination is highly effective in preventing infection from most of the cancer-causing strains,” says Ogilvie. All I knew when I was offered the vaccine was that the three necessary doses would cost me around $600 because the vaccine wasn’t covered by my provincial healthcare and I didn’t have a private insurance plan. That amount of money was prohibitively expensive at the time. That’s a failure at the policy level, where we have no publicly funded pharmacare plan to go along with our publicly funded healthcare system. 

There are also failures at the interpersonal level, when we judge each other on matters related to sex and sexual health and make it harder for people to disclose their struggles and get the support that they need—even just from one another. “When women have to go through cervical cancer alone without support, it’s very difficult,” says Lheureux. “It can significantly impact your life, even when you have a good prognosis.” Some of the physical impacts can include partial removal of the cervix, which can affect future pregnancies, a hysterectomy (a.k.a. removal of the uterus) that makes carrying a child impossible, or treatments like chemotherapy or pelvic radiation, both of which may kill viable eggs or damage the ovaries so they can no longer produce estrogen, which causes early menopause.

Cervical cancer also has psychological repercussions, like fear of sex. The first time Blake had intercourse after her five-week treatment plan that included chemotherapy, plus external and internal radiation, she was terrified it would be painful. “It didn’t hurt, but it felt very different, sort of stuffed,” she recalls. “It wasn’t enjoyable. There are also numb spots, and I don’t know if sensation will come back.” When she brought up the topic in her cancer support group, she was told to go elsewhere if she wanted to talk about sex.

For other women like Missy Foley of Red Deer, Alta., who was diagnosed with stage 3 cervical cancer at 38, the fear of sex stems not from treatment but from the cause of the cancer. “I'm afraid that if I have sex, I'm going to get cancer right away,” she says. “I'm so paranoid about it.” Two years after her treatment, she still hasn’t had intercourse with her husband of 17 years, with whom she has four children. “He’s been patient. I feel like it’s unfair to him. But I just can't get past it.”

This is why education and support around sexual health, screenings and interventions at all levels is so important. We need healthcare policies that are inclusive and expansive; we need healthcare providers who are compassionate, unbiased and capable of starting uncomfortable conversations; and we also need everyday people to normalize speaking about sexuality with their children, friends and partners so that, going forward, we live in a world where sexual health is a part of everyday conversation, like dental care or the weather. 

I want to be part of that change. When I discovered that shame was an all-too-common side effect of a cervical cancer diagnosis (a realization that came after speaking with my therapist and support nurse), I grew angry at the secrecy that shrouds all types of STIs. I started sharing my diagnosis on social media, hoping to reduce the stigma and raise awareness about the connection between cervical cancer and HPV, and was overwhelmed by private messages from women who’d had abnormal Pap results and even LEEPs to remove precancerous cells. These women are everywhere! Before, I’d thought an abnormal Pap result was rare.

Writing about my experience, I want to reach even more women beyond my small social network, because sharing our stories has the power to eliminate stigma where none should exist. I hope that, one day, cervical cancer will become a thing of the past—we have the immunization programs, screening options and treatments to make it happen. Until then, there’s something every person who receives a cervical cancer diagnosis needs to know: you’re not dirty, you’re not broken and you’re not alone. 

*Name has been changed