The truth about surviving cervical cancer in your 20s

It’s a bright Saturday morning in July 2010, and the parking lot in downtown Vancouver is a sea of personalized T-shirts. A group of laughing women rush past, their faces streaked with face paint, matching water-bottle belts strapped to their hips. Rihanna’s “Don’t Stop the Music” blasts from speakers strung along a chain-link fence as throngs of people in neon runners edge their way closer to the start line. “Seven years cancer-free!” proclaims a petite woman in a pink Team Toni shirt. Her entourage hoots and hollers. Cancer survivors, thousands of them, stand shoulder to shoulder, waiting for the charity run to begin. Self-consciously, I bob my head to the music, desperate for the cancer camaraderie to take hold. But I feel like an imposter.

The first rule of Cancer Club says you should be loud and proud if you’ve beaten the disease. It’s unspoken, obviously, but after undergoing radiation or chemotherapy or surgery as dramatic as a mastectomy, you really ought to be the life of the remission party. It’s no small thing to endure the ghastly side effects of those treatments (unimaginable fatigue, unrelenting vomiting, hair loss), so if you do somehow claw your way back to health, you sure as hell aren’t going to tiptoe around the subject of being a survivor. But for some of us, especially those who faced less invasive treatments or more positive prognoses, embracing that hard-won survivor status can be a challenge.

Dr. Sophie Lebel, an Ottawa-based clinical psychologist who specializes in supporting people affected by cancer, says this is actually a well-documented, but seldom acknowledged, phenomenon within the cancer community. “A lot of people compare themselves with patients they see as worse off than they are,” says Lebel, adding that this can lead to feelings of guilt and unworthiness. Being a cancer survivor is complicated, so much so that even the word survivor is fraught. “It puts a positive spin on cancer,” she says. “We call it the ‘tyranny of positive thinking,’ in that patients often feel as though they have to be grateful, or that they’ve come out better for having had the disease. But that’s not the case for a lot of people.”

When I was diagnosed with cervical cancer at 27, I found an unexpected cancer confidant in my friend Heather, who’d gone through chemo for lymphoma at 19. At first I was surprised when she confessed that she also felt funny about dropping the S-word. After all, she explained, she “lucked out” and hadn’t had radiation. I was sure that if anyone belonged in the survivor sorority, it was a woman who’d spent the last year of her teens holed up in a chemotherapy room, but she felt as conflicted about her experience as I did. For me, it’s been a mix of anger, resentment, guilt and fear — nothing like the emotions you see portrayed in the ads for cancer runs.

As many as two in five Canadians will develop cancer in their lifetimes. Thanks to advances in screening procedures and treatments, survival rates are improving: 63 percent of people will survive five years after cancer is found. This is great news for anyone trying to process a cancer diagnosis, but what no one tells you is that it can be as tough to navigate the emotional labyrinth of survivor culture  as it can be to manage the physical symptoms of the disease itself.

The dreaded call

The call came six days into January 2010. Doctors aren’t supposed to give bad news over the phone, but the oncologist didn’t wait to deliver my diagnosis in person. “We’ve found a tumour on your cervix,” he told me. “We need you to come in right away.” Stunned, I managed to call my dad, cringing when I had to use the word cervix and wishing that my mom, who had passed away three years before, was the one being debriefed about my body. “Dad,” I said, fighting back tears, “it’s going to be okay.”

I felt the first twinges of guilt over my diagnosis at the hospital later that week. As my sister-in-law and I squeezed into an elevator with a group of medical residents on their way back from the cafeteria, a frail woman in a blue housecoat shuffled in behind us. She pushed the already illuminated button for the fifth floor — our floor. I was strangely drawn to the woman, with her sunken eyes and ashen skin, and momentarily considered telling her that I had cancer too. Immediately, I felt ashamed. How could I even begin to compare us? And when the elevator doors opened, and she veered off toward a corridor marked Radiation Reception, I felt even worse. All I needed was surgery. “Here’s what we’re going to do,” my oncologist said as he thumbed through the results of my tests following an abnormal Pap smear from a few months before. My unflappable sister-in-law scribbled down words like squamous and cervicectomy on a yellow notepad while he outlined the four-hour surgery that would remove most of my cervix, along with the top half of my vagina and my pelvic lymph nodes. The goal was to ensure that the cancer cells wouldn’t invade other parts of my body.

It quickly became apparent that I was not likely to die from the disease. Despite all the controversy over HPV vaccines, cervical cancer is actually relatively rare — the Pap test is so effective that it catches most mutating cells before they ever become cancerous. Cervical cancer is also seldom life-threatening if it’s caught early enough. In fact, the five-year survival rate for early-stage cervical cancer is 95 percent. What my oncologist was most concerned about was preserving my fertility.

Fifteen years ago, my doctor would have ordered a radical hysterectomy, leaving me without a uterus and unable to conceive. Instead, I would be undergoing a radical cervicectomy. It’s a new procedure by medical standards (it was pioneered by the French in 1994) and is performed in only a handful of Canadian hospitals. With luck, it would mean that my oncologist could remove my tumour and put the puzzle of lady parts back together in working order, ensuring that whatever was left of my cervix was strong enough to hold a pregnancy close to term. It was my best shot at having a baby one day, my doctor assured me, gesturing at a photocollage on the wall behind him. Newborns in little hats stared out from the snapshots, a pre-digital shrine to his success stories. I knew the pictures were supposed to make patients like me hopeful. Instead, I was quietly freaking out, contemplating a childless life.

That night, my anxiety kicked into overdrive as I typed cervicectomy into Google’s search bar. The internet, with its minefield of impossibly scary — and often fictitious — stats, revealed that just 21 women worldwide had given birth after having the procedure. In actuality, about 70 percent of patients who undergo the surgery are able to conceive, according to a 2007 study in the European Journal of Surgical Oncology. Still, the procedure is rare, largely because the disease itself is (I was one of roughly 1,300 women diagnosed in Canada in 2010), and nearly a third of the women diagnosed are between 35 and 55, so they usually elect to have other procedures, such as hysterectomies.

The complications

About 20 days after my initial diagnosis, I woke up in a hospital bed, achy and nauseous. The news from my oncologist was good. So good, in fact, that my poor dad no longer looked like he was about to have a stress-induced heart attack. Visitors armed with orchids and celebrity magazines from the hospital gift shop started to cycle through. Everyone was relieved to hear the surgery was a success, and in a few days I’d be discharged.

Miraculously, it took less than a month for life to recalibrate. I weaned myself off the pain meds and watched the stitches — little black Xs dotting my stomach, with larger ones snaking across my bikini line — slowly dissolve. I tried to convince myself that cancer was behind me, and most of the time I managed to ignore the nagging what-ifs about recurrence. On days when it weighed on me, I just told myself I’d be fine, that I was fine. 
But as the second anniversary of my surgery approached, I couldn’t ignore the strange aching in my legs anymore. I had moved to Toronto from Vancouver for work and hoped it was the harsh Ontario winter that was making my calves swell. “It’s the beginning of lymphedema,” said the specialist at a downtown hospital, who explained the condition was a side effect of removing lymph nodes, the little organs that pump lymphatic fluid — and cancer cells — throughout the body. Without lymph nodes in my pelvic region, fluid was building up in my legs, causing swelling and pain. In some cases it can make one limb balloon to twice the size of the other. I vaguely recalled my oncologist discussing this at one of my appointments, but at the time it sounded like one of those unlikely disclaimers you see in small print at the bottom of a waiver. Just like that, cancer was all I could think about again. “I’m sorry, but there’s no cure,” said the specialist. “You’ll have to wear compression tights to manage the swelling.”

The tights do a lot to help relieve the pain and discomfort, but there’s no easy way to put them on. It takes a good five minutes of tugging, yanking and panting to wrestle into them every morning. Things could be worse — a lot worse — but those damn tights still really upset me. On the rare days when I try my luck without them (usually on hot summer afternoons), I pay for it with swollen, throbbing legs — and a lot of resentment over getting cancer in the first place. This is quickly followed by guilt for getting upset over something as trivial as the inability to wear strappy sandals. Besides, much more pressing is my fear I won’t be able to have a baby.

The truth is, I still don’t know the complete outcome of my procedure. Yes, the cancer is gone — I still get checkups every six months to confirm that — but what about starting a family? I’m now in a loving relationship, but I’m left wondering whether my compromised cervix will fail us. Will we struggle to conceive or go through the terrible sadness of multiple miscarriages?

I’ve sat in waiting rooms all around the city to meet with fertility doctors and high-risk pregnancy specialists to learn everything I can about my post-cancer situation. Often, I’m the first patient they’ve seen who’s had the surgery, so there aren’t any stats for them to share. I recently had a well-meaning ultrasound technician exclaim during an examination, “Oh, wow — you don’t have a cervix! I’ve never seen that before. Isn’t science amazing?”

Lebel says it can be especially difficult for cancer survivors to navigate their fertility concerns because often there aren’t solid answers to address their fears. “The issue I routinely see with fertility is that health care providers are not comfortable with, or prepared for, the conversation,” she says. “You really need a sympathetic health care professional to guide you.” I finally found that person in one high-risk obstetrician, who tries to be encouraging. “You’re technically high-risk because you don’t really have a cervix, but you’re not one of the patients I’d be very concerned about,” she tells me. I’m desperate for something more concrete, but I still have hope, especially when I think about that photocollage hanging on the fifth floor of the hospital back in Vancouver. I’ve spent all this time longing for the day when I can slip a snapshot of my own baby into a thank-you card to let my oncologist know I was one of his success stories. I’m determined to be.

The aftermath

It’s now been four and a half years since I stood in that Vancouver parking lot, just six months after my diagnosis, and felt like an interloper who’d fast-tracked her way through cancer. But I’m no longer shy about calling myself a survivor. What changed for me was living with the lasting indignities of the disease. I may have been one of the lucky ones who sidestepped chemo and radiation, but that doesn’t mean I don’t have my own battle scars. Each morning when I pull compression tights over calves that are puffy and sore, it’s a reminder that the effects of cancer are lifelong and inescapable. The same is true whenever I see a woman walking down the street pushing a stroller.

The emotional aftershocks of cancer can hit you at any moment — no matter how many years have passed. They don’t end when you’re discharged from the hospital or when you have your first cancer-free checkup. Contrary to what many people think, says Lebel, the fear of cancer recurrence never goes away completely. “It’s normal to feel anxious about the cancer coming back,” she says. “Those feelings may occur when you have your annual oncology appointment, or on the anniversary of your diagnosis.”

After my surgery, I met with a psychologist at the hospital who helped me work through some of the post-traumatic stress of cancer and what it was like to go through the experience without my mom. But what might we have discussed if she’d understood the medical implications of my procedure, or how to prepare me for living with lymphedema, or the possibility of infertility? Dr. Joseph Ragaz, a Vancouver oncologist and clinical professor at the University of British Columbia, says Canada needs a nationwide program to better support cancer survivors in general. “We have a conveyor belt syndrome where oncologists are hugely busy, and patients have limited time with them,” he says. Ragaz is part of a pilot program in Vancouver called InspireHealth, which offers cancer patients counselling by physicians who are able to address both the medical and psychosocial impacts of their illness.

Lebel finds she spends a lot of her time trying to support people who feel undeserving of the survivor label. She encourages her patients to pay attention to the thoughts that make them feel guilty when they compare themselves with others. “I recommend talking to a supportive friend, or bringing these concerns up with a support group,” she says. “But if the feelings don’t diminish, it’s important to address them with a mental health professional.” Although she acknowledges that asking for help can sometimes be a struggle in itself, it’s a crucial step to take.

In the end, I’ve decided that it’s foolish to compare survivors — we live through and beyond the disease in our own ways. A woman who underwent chemotherapy may feel inferior to a woman who had the double mastectomy — we size one another up and rank ourselves in all aspects of life, so why would cancer be any different? But instead of succumbing to some imaginary cancer-patient hierarchy that threatens to diminish our experiences, I’ve come to realize that it’s better to be champions of our own stories. And so at the next cancer charity run, look for me — I’ll be standing confidently among the thousands of men and women who are all survivors in a million different ways.