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ovarian cancer

what it feels like: ovarian cancer made me listen to my gut feelings

"when it comes to ovarian cancer, it’s so dependent on the human side of it in the sense that you don’t have very clear symptoms."

by karen hawthorne

published jun 26, 2024

last updated jun 27, 2024

7 minute read

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7 minute read

join the conversation

alvina urges others to "act on that gut feeling and listen to it and take it as real information" regarding subtle symptoms. supplied

as a working mom with a lot of responsibilities on the job and at home, alvina nadeem did what many women tend to do – shrug off tiredness and lack of appetite, chalking it up to the stress of her every day. who doesn’t get tired and not feel like cooking or eating sometimes? the trouble was these were early signs that something was wrong with her health. in hindsight, she realizes she could have listened more closely to her body and done something about it sooner. it’s a lesson she’d like others to hear.

back in february 2023, these ongoing symptoms caught her attention and concern. “i thought, ‘i’m a mom, i have little kids, work, whatever,’” says alvina, 37, a change management consultant in repentigny, a suburb of montreal. “but it didn’t make sense because there was no real reason to be stressed. i was looking at my life, and i’m like, ‘why would i be stressed? i’m okay. i have a good work-life balance; things are going well.’ so, it was like a little question mark that needed an answer in the back of my head.”

then, her monthly period, which typically happened like clockwork, started nine days earlier than usual, and the weirdness intensified when she had bad menstrual cramps as well. she wasn’t someone who usually had the discomfort of cramps. worse, the cramping didn’t stop and neither did the bleeding. it also had become a darker colour and “just didn’t seem right.”

diagnosed with ovarian cancer

that march, alvina was diagnosed with ovarian cancer, the most fatal gynecological cancer. vague symptoms like bloating and lower back pain and the lack of a screening test mean that it’s usually diagnosed at very advanced stages where the cancer has spread throughout the body. because the tumour can be a mix of different types of constantly evolving cancer cells, with some cells vulnerable to chemotherapy while others aren’t, the chemo treatment is less effective, and statistics are grim. about 3,000 people are diagnosed in canada each year, and 2,000 die from the disease, according to ovarian cancer canada.

of those with ovarian cancer, only one in two people will still be alive in five years. as the national institutes of health reports, ovarian cancer is one-tenth as common as breast cancer but three times as lethal.

in this context, alvina considers herself lucky that her ovarian cancer was caught early at stage 1 before spreading. the tumour was the size of a grapefruit and still treatable with surgery. she talks openly about the steps to her diagnosis that brought the fear and uncertainty of the unknown and the necessary mindset to keep calm and focus on the treatment plan.

with mounting worry about her symptoms, she went to her family doctor’s clinic, where she did several blood tests to rule out a miscarriage or other causes, but everything seemed normal. the doctor attempted a visual gynecological exam but couldn’t complete it because of the menstruation. she was advised to come back if it didn’t improve in a week when her period was done for a full exam. at that point, she had been menstruating for 14 days.

“so obviously, it wasn’t just menstruation,” she says. frustrated, she returned to the clinic when the bleeding stopped, and the doctor did the gynecological exam, discovering that alvina’s cervix had somehow shifted out of alignment and her uterus felt inflamed. she was referred for an ultrasound for imaging. even during the ultrasound scan, the technician had an odd look that unnerved her.

“the radiologist comes in and says, ‘your uterus is fine. it’s just that we see a mass on the left side. we think it’s a mass on your ovary. so, we are going to ask your doctor to order an mri asap because we want to make sure that it’s nothing.’ i think i was hoping for the best but also preparing for the worst. the word cancer had entered my mind, but i didn’t want to jump to conclusions.”

her family doctor got the results of the mri, and alvina was alone in her home office when the phone call came. the doctor asked her to bring someone with her to an appointment later that day. “when she said that, i was like, oh, man, that’s not good news. that’s when they say you have cancer.”

a professional approach to cancer treatment

she cried for a few hours before her husband picked her up to see the doctor. then, she shifted into her professional “project manager mode” to take action. “i was like, this is just another project, and i’ve got to think of it like that because that’s how i’m going to gain back some control,” says alvina.

like her job, when her doctor explained that it looked like ovarian cancer, and fortunately, stage 1, alvina asked about the timelines and the stakeholders and tried really hard to stay focused on actions. the approach helped her to avoid freezing up in terror and ask all about the details of her cancer and treatment. she says there’s a sense of empowerment in staying informed.

there was no history of cancer in her family, and she didn’t have any risk factors like excess weight, sedentary lifestyle, smoking or having gone through menopause. so, while the cancer journey was completely unexpected, her level-headed approach to the months ahead saw her through surgery in april to remove the mass and undergo a total hysterectomy (removing her entire reproductive system), a lengthy leave from work to continue to heal and recover, and six rounds of chemotherapy from may to september as an important proactive measure to prevent her cancer from coming back. the chemo, as expected, left her exhausted and almost bald by the second treatment.

what’s also proven challenging is the mishmash of symptom outcomes. the total hysterectomy puts women in menopause, regardless of age, so alvina has hot flashes and fatigue that were compounded by her chemo. her cancer is hormone-receptive, so she can’t take hormone replacement therapy to help with symptoms because it might trigger cancer cell growth and recurrence.

“when you’re not taking hormones, it’s more like each symptom becomes its own thing that you have to address. so, for example, my metabolism feels like it’s just gone, so i’ve joined a gym and go three to four times a week, and i’m working with a kinesiologist because my family doctor recommended it, who told me that a good way to boost your metabolism is to do some strength training because your muscles will need the energy, so then they’ll force your body to metabolize,” she explains, adding exercise has helped increase her energy and build strength.

“it also helped mentally because going through this at a young age, and especially hitting menopause; there’s this weird sense of frustration and anger towards my body. or it’s feeling like you were in a car accident, and now you’re driving this smashed-up car that does not work the same way, but you have a long road ahead, hopefully.” she plans to keep up her health regimen to return to work in september.

learning from ovarian cancer

what she recognizes now about her cancer journey is the positives, turning a life-altering disease into something to learn from – and how she can help others follow her lead.

“honestly, this whole journey has been such an experience, and realizing all the luck that i had within the bad luck itself. first of all, just a lot of lessons, like listening to yourself, listening to your gut, not dismissing yourself,” she says. “when it comes to ovarian cancer, it’s so dependent on the human side of it in the sense that you don’t have very clear symptoms. you’re not going to get a mole or a lump in your breast. you’re going to feel it physically, but in subtle ways, not in a very obvious way.”

cancer has changed her, connecting her to her intuition and sensitivities, which has helped her navigate the ups and downs. “it’s made me more likely to act on that gut feeling and listen to it and take it as real information. treat it like a real data point.”

she also talks about the privilege of having a family doctor in canada who has been her champion, urging the cancer centre to see her within a week because of the brief window to operate while her notoriously fast-spreading cancer was still a stage 1. she credits her oncologist for building a partnership with her to be prepared for all the potential outcomes and side effects of surgery and treatment.

it’s this fine-tuned self awareness and learning that she wants to pass along to others. she’s become a patient partner with ovarian cancer canada to support people and change how cancer is perceived.

“a big thing is normalizing talking about cancer. the response we have to cancer is a bit outdated compared to where the research is and where treatments are now. i feel like how our gut or nervous system responds to hearing ‘you have cancer’ is stuck in the past when it was like an immediate death sentence.”

having gone through it all, alvina says that a huge part of healing is how we respond to cancer and that vulnerable patients can take their power back by asking questions, pushing for answers, and letting others know that they’re not just going to sit and let it happen.

best words of advice?

“listen to yourself, but also ask all the questions, ask how things work. because that’s where self-advocacy comes in. if you don’t ask the questions, people won’t tell you because they’ll assume that you don’t want to know or that you can’t handle the information. so you have to ask.”

for more about her cancer journey, visit her blog ocwarriorqueen.com.

karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

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what it feels like: ovarian cancer made me listen to my gut feelings

"when it comes to ovarian cancer, it’s so dependent on the human side of it in the sense that you don’t have very clear symptoms."

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