Above: Farrah Khan, right, and her spouse Kristyn Wong-Tam are pictured at a hospital appointment. Khan has been diagnosed with neuroendocrine cervical cancer, a rare and aggressive form of cancer.Farrah Khan
Farrah Khan is the executive director of Action Canada for Sexual Health and Rights.
Death, especially my own, is not something I’ve ever spent time dwelling on. But now, at just 44, mortality clouds my thoughts, even when I’m sleeping.
Three months ago, I started my dream job as the executive director of Action Canada, a leading national organization for sexual and reproductive rights. It was a step away from years of the daily realities of running a sexual-assault centre, and a conscious move toward prioritizing my health and well-being. This would finally be my year. I’d spend more time with my family and enjoy a career I’d always wanted and worked for. I was choosing joy.
It was a crucial time for global reproductive rights, as we neared the one-year anniversary of the reversal of Roe v. Wade in the United States. In public, I was speaking truth to power. But in private, I could barely get out of bed. I beat myself up, thinking I was lazy. As it turned out, my body was trying to tell me something.
A few weeks ago, I went to my family doctor for a Pap smear, a quick check of a lump in my right breast and a chat about possibly having another baby.
The lump was nothing, but the Pap was painful. I bled heavily for days afterward and was sent for further testing. Baby plans went on hold.
Less than a week after seeing a specialist, I was called in to discuss the results. She dropped a bomb on the life I’ve built so far.
“You have cancer. Neuroendocrine cervical cancer – it is rare and aggressive.”
Suddenly, instead of revelling in my new job, I was left wondering if I’d be around for my four-year-old son’s kindergarten graduation next summer.
Once I received the diagnosis, my care was transferred to an oncologist-gynecologist, and I completed more tests. It was a relief to find her affirming and compassionate. I asked her four things:
What are the treatments people get for cervical cancer?
“It could be a hysterectomy, chemotherapy and intensive radiation therapy. We need more tests to determine your treatment plan.”
Do people die from this?
“Yes.”
Is death more likely if you have the form of cervical cancer that I do?
“Yes. But we are treating for a cure, so that your cancer goes away and does not come back.”
Okay. How long will treatment take?
“Until December, at least.”
There was no breath left in my lungs.
The irony of receiving this news after becoming the leader of a sexual and reproductive rights organization is not lost on me. In my new role, I had planned to continue fighting for better sexual-health outcomes for those in my community and beyond. Now, that mission is on hold. I will have to set my professional goals aside for at least the next six months. But my hope in publishing these words is to continue raising awareness of the importance of sexual and reproductive health, particularly for queer, racialized people like me. Cancer is an injustice all on its own, but I’m mindful of the other layers of navigating this illness as a queer woman of colour. In both my work and personal life, I’ve seen the health care system’s continuing lack of openness in discussing and prioritizing the sexual health of the LGBTQ community.
For the past two decades, I’ve worked to unlearn the myths and misinformation I had absorbed about sex when I was younger. My Catholic high school’s abstinence-only sex education was not remotely adequate or comprehensive; instead, it was built on fear and shame, only speaking to some of the needs and experiences of heterosexual people. I learned nothing about safer sex, sexually transmitted infections (STIs), contraceptives or consent.
As I moved into adulthood, homophobia profoundly impacted my experiences within the health care system. During a routine exam in my 20s, my first doctor in Toronto asked if I slept with men. I told him I had in the past, and he scoffed to the resident stationed at his side: “See? Most women who become lesbians sleep with men first.” When I shared in another appointment that I wanted to explore my options for getting pregnant, the doctor told me that since I am gay, I should adopt. The same reason was given when he tried to dissuade me from having a Pap smear – since I was no longer having sex with men, he felt it was unnecessary. Experiences like this slowly eroded my trust and comfort in sharing information freely with health care providers. I felt I couldn’t trust the health system to protect me.
While Canada is, by many measures, a progressive country, it’s easy to forget that we have a very recent history of institutionalized homophobia, the effects of which still linger throughout our society, including in health care. Homosexuality was considered a mental illness by the Canadian Psychiatric Association until 1982, and conversion therapy, a known harmful treatment aimed at changing a person’s sexual orientation or gender identity, was only outlawed nationwide in 2022.
Decades of studies have shown that LGBTQ populations are more vulnerable to certain illnesses and conditions, and face poorer health outcomes. That’s not because our bodies or minds are inherently different, but because of the burden and real effects of social rejection, lack of societal support, health care services that are not designed for us, harassment and other stressors. For example, data from Parliament’s Standing Committee on Health show that chronic diseases tend to appear earlier for LGBTQ individuals, who also experience a greater prevalence of cardiovascular and respiratory diseases when compared with heterosexual Canadians.
It is still common for health care providers to ignore or dismiss our symptoms, especially if we are Black, Indigenous or racialized. Trans and non-binary people, in particular, face a dangerous combination of ignorance and negligence in the medical community about queer- and trans-specific health. A 2016 national survey of Canadian medical students found fewer than 10 per cent felt knowledgable enough to provide health care to trans patients. Many queer people are left in the dark about how their bodies work or how being LGBTQ might uniquely impact their health, leaving them unable to properly advocate for their own health care needs.
The potential for poorer health outcomes for the LGBTQ community also extends to cancer. On its website, the Canadian Cancer Society notes that LGBTQ individuals are “less likely to have a primary health care practitioner and more likely to delay seeking medical care or screening because of actual or perceived discrimination.” LGBTQ communities are also “less likely to get screened” for breast, cervical and colorectal cancer “than non-trans and heterosexual counterparts. This means that LGBTQ communities have a higher risk of dying from these cancers.”
I will be forever grateful that, in my mid-20s, I heard a presentation by a manager from Women’s Health in Women’s Hands, the only community health clinic in North America specializing in working with Black and racialized women. I was impressed that they were culturally competent, trauma-informed and queer-affirming, and I immediately applied to be a client. Receiving care at this clinic helped heal my fears of working with health care providers, but I wonder what could be different for me today if I had the affirming, compassionate care I have now back in my teenage years and early 20s.
For example, as a young person I certainly had not learned about STIs such as the Human Papillomavirus. HPV is the most common STI in Canada and around the world. It is the leading cause of cervical cancer and the near-universal cause of anal cancer, which impacts women but also disproportionately impacts gay and bisexual men. HPV is also responsible for 40 per cent of vaginal and vulvar cancers, between 40 per cent and 50 per cent of penile cancers, and 25 per cent to 35 per cent of mouth and throat cancers in Canada. Most sexually active people have an HPV infection at least once in their lifetime, whether they have multiple partners or just one. The majority will clear the virus in a year or two and never have any symptoms. For a rare few of us, it becomes chronic and turns into, in my case, cervical cancer. Every year in Canada, around 1,450 women are diagnosed with cervical cancer, and an estimated 380 die from it, according to the Canadian Cancer Society. Routine Pap smears are meant to serve as a bulwark against cervical cancer, detecting irregular cells that may have developed due to the presence of HPV (if you haven’t lately, now is the time to book a Pap test and an STI screen.)
Lately, I’ve been contemplating the ways in which I’ve been both lucky and unlucky when it comes to my cervical cancer journey. There is now a vaccine for HPV, which has significantly decreased the number of cervical cancer cases since it was approved by Health Canada in 2006. Publicly funded HPV programs were introduced for girls and women aged 9 to 26 in 2007, just as I celebrated my 27th birthday. It’s infuriating to know that the connection between HPV and cervical cancer was first confirmed by Nobel Prize winner Harald zur Hausen in the 1980s, while researchers in Australia had the data needed to produce an HPV vaccine as early as 1991. “It did not take too long to convince the research leaders about the science,” co-developer Ian H. Frazer wrote of the vaccine’s production, “but it took rather longer to convince business developers to appreciate that there might be a market.” There is not a day that goes by right now when I don’t wish the HPV vaccine had been available sooner.
Multiple studies published in the past two decades have found that lesbians are often overlooked for routine Pap smears because doctors assume we don’t need them, putting us at a greater risk of undetected cervical cancer and delayed treatment and diagnosis. It may seem strange to equate luck with my current situation, but without my most recent Pap smear, I might not have known about my cancer diagnosis until it was too late. As it stands, I might still have a chance. But what about the queer women who are, statistically, still being passed over for routine screening? What might happen to them?
I am worried about my own cancer outcome. Still, as a professional sexual-health advocate, I also worry that my knowledge base makes me an outlier – I have the tools required to ask the right questions and advocate for the tests I need, but this is not the standard experience for people like me. I am also part of the small sliver of a queer and racialized community that has found my way to culturally competent health care on both fronts. Reproductive rights and sexual health are essential to our overall health and well-being, but many LGBTQ people have been overlooked or disempowered by a health care system stacked against them. I worry about the many in my communities who are not receiving the basic care they deserve as human beings – the specific health questions that go unasked and unanswered, the treatments that go unprescribed, and the routine screenings that remain unscheduled. The consequences are severe – a matter of life and death.
Today, reproductive rights, trans rights, gender-affirming care, and sexual-health education are literally under attack worldwide, furthering systemic inequality. Our race, our gender, our income, our citizenship status – all of these factors still shape our health outcomes in Canada’s public health system. I am proof of it.
I wonder what will happen to me and others receiving similar diagnoses amidst a health care crisis. The hospital staff I’ve been interacting with are excellent but stretched. Underfunding, moves toward the privatization of health care systems, and wage caps for nurses and other health workers have led to staffing shortages, longer wait times, and closings of emergency rooms and critical-care units nationwide. The decision by some parents to not vaccinate their children, including against viruses such as HPV (whether due to misinformation about vaccines generally or the stigma attached to HPV as an STI) is cause for grave concern. Addressing gynecological cancer requires investment in comprehensive screening programs, public education campaigns, and accessible treatment options. People need access to information and services regardless of their income or health insurance status. We need more public health infrastructure, not less.
Farrah Khan, her spouse Kristyn Wong-Tam and their son are pictured celebrating his birthday at home.Jessica Laforet
At home, I’m in the midst of going to test after test while trying to stay present for our son. He’s been learning about feelings, recently grabbing onto the phrase, “I’m sad.” Postdiagnosis, I respond to him, “Me, too.” As he learns to express his emotions, I’ve been riding a tidal wave of my own; I’ve played down the gravity of this diagnosis, convincing myself I’m overreacting. It’s a survival mechanism. Acceptance and security have been hard to come by in my life. I was finally feeling safe. It’s horrible to be back in a place where I feel like I have no control and could lose everything. I’m scared.
When I first got the news, I naively suggested to my doctor that treatment be scheduled for the fall. I had a lot of work travel planned before then. After years of putting things on hold with pandemic cancellations and becoming a parent, I was excited to jump back in. But getting a cancer diagnosis is like your life’s hard drive being wiped clean. Suddenly, personal priorities vanish, along with family plans and work calendars. Our culture is great at rewarding the grind and a dogged commitment to work, but cancer reminds us that we’ve got it all wrong.
I originally went to my doctor hoping to explore the possibility of having a second child and left with the worst news instead. I’m terrified that I won’t be able to be there for our son. My heartbeat and voice are the first sounds he ever heard; my skin is his favourite smell. I’m the one he calls for a snuggle first thing in the morning.
I’ve done what I can to prepare for the unknown: I’ve written a will, made caregiving plans and even crafted a special toy for my son to help him feel close to me. The love and responsibility of parenthood are already gut-wrenching. Now I’m also facing an uncertain future, mourning what I will miss in his life, no matter the outcome.
I saw my career change as one way to consciously choose joy in my life. Cultivating joy won’t stop because of this diagnosis. I’m zeroing in on the light wherever I find it, leaning into gallows humour – I’ve been making memes about how my health is unfolding, a bittersweet coping mechanism. I cut my hair before anyone knew about my diagnosis so I could own the pleasure of change instead of contending with the sadness of it. My spouse and I held a “Thank You For Your Cervix” themed birthday party for me. We treated it as a celebration of the community we’ve built, introducing some of our favourite people to each other so they could have a circle of support to lean on if things get rough. Though I’ve always prided myself on being the one people could call when they needed help, I’ve decided to try and be okay with not being the first responder to my friends and community at this moment. I have a care team now that sees me in my most vulnerable state. I’ve learned there is joy in allowing others to show up for our family.
Most importantly, I am spending more time with my loves: my spouse and our son.
Last week, I threw on the song More Than This by Roxy Music, and we spontaneously had a dance party in our living room.
“This is it, right here,” I thought. “I just want more of this.”