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how i care for breast cancer: ‘you just have to take it as it comes, moment by moment’
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due to the covid-19 pandemic, alexander grill-donovan, right, was not allowed to be there to support his girlfriend jaclyn carter, left, at the time of her mastectomy.
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when alexander grill-donovan’s girlfriend told him she felt a lump in her breast, he was surprised, but not overly concerned. she wasn’t worried about it, so he thought likely it was nothing. after all, how many women in their early 30s get breast cancer? and jaclyn carter, or “jacs” as he calls her, is a healthy, active person with a great outlook on life and exciting career path ahead.
“we had very little reason to think that it was actually breast cancer, probably because we just didn’t know anything about breast cancer,” he says, adding he had no idea he would become a caregiver for the love of his life when he was 30 years old.
“anybody that i’ve known who had breast cancer would be someone’s parents who were in their 50s. so there was no real reason to worry.”
their instincts weren’t wrong, exactly, in terms of statistics.
breast cancer in young women: a rising concern
breast cancer in women under the age of 40 is rare. only about seven per cent of those diagnosed with breast cancer have yet to clear their 30s. overall, estimates suggest one in eight canadian women will develop breast cancer during their lifetime and one in 34 will die from it; 28,600 women were diagnosed in 2022, according to the canadian cancer society. it’s the second leading cause of death from cancer for women in canada. about 83 per cent of cases occur in women over 50.
however, incidence of breast cancer in women under 40 is rising, flagging the need to re-examine a medical system that is geared toward older women. researchers at women’s college hospital in toronto and the university of toronto published a review of the literature on breast cancer in young women in march 2023, noting that young women are not the focus of screening programs and tend to be diagnosed in more advanced stages. these patients also have worse clinical outcomes and treatment complications compared to older patients – yet the early onset breast cancer is “poorly understood with a gap in research regarding the risk factors, diagnosis, prognosis, and treatment.” the authors say that more age-specific clinical data and treatment options are required.
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“are you saying that i have breast cancer?”
three years ago, deep in the pandemic, grill-donovan, an architectural technologist, and carter, an education consultant at the university of calgary, were working remotely from their downtown calgary home. carter, then 33, called her family doctor to tell her about the suspicious lump in her breast and was scheduled for an ultrasound. at that appointment, the radiologist referred her immediately for a mammogram and biopsy. she had the mammogram the same day as the ultrasound and came back a few days later for the biopsy. then at the biopsy appointment, the radiologist started talking about seeing a surgeon and oncologist as if her family doctor’s office had already notified her that it was highly likely she had cancer. they hadn’t, so it was a shocking experience.
“it happened on a long weekend. her doctor’s office hadn’t gotten the report yet and hadn’t spoken to jacs. but the radiologist assumed that she knew. so she’s sitting on the table and is like, ‘are you saying that i have breast cancer?’ she was just stunned. it was not ideal,” grill-donovan recalls.
the results of the biopsy took about a week, and these confirmed that carter was hormone-positive estrogen and progesterone breast cancer (er/pr+) grade 2 invasive ductal carcinoma (idc), with no family history and no genetic risk factors. hormone receptor-positive breast cancer can be treated with hormone therapy drugs that lower estrogen levels or block estrogen receptors. as for idc, invasive means the cancer has spread into surrounding tissues, while ductal means the cancer started in the milk ducts, which are the tubes that carry milk to the nipple. carcinoma refers to any cancer that starts in the skin or tissues that cover internal organs, like breast tissue.
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grade 2 is a faster-growing cancer than grade 1 but is still considered an early stage breast cancer so it has less chance of recurrence.
processing a breast cancer diagnosis
with the formal diagnosis, their world came to an abrupt stop, momentarily. the couple went out with carter’s parents to a bar to have a drink. “we were just trying to process that information and what the next steps were. and then it all moved pretty quickly from there,” grill-donovan says. “it gets real very fast.”
he had a lot to manage all at once. they had bought a new townhouse and just moved in with carter’s parents in calgary in the interim to prepare for the big move later that summer. her surgery was booked for may, a few weeks after the diagnosis, and grill-donovan was thankful for the support of carter’s family and friends. their strong social network was a lifesaver in many ways, fulfilling the need for community and self-care. “you feel helpless because you can’t fix this,” he says. “we have such a strong community, which really helped.”
carter had signed up for courses with wellspring alberta cancer support, but grill-donovan felt he was “spread too thin” to get involved because of all the added responsibilities he was now shouldering as a caregiver. in hindsight, he says he’d recommend caregivers sign up immediately for valuable learning that would have helped him stay more positive.
it was at this early point, too, that carter also had to make immediate and distressing decisions about her fertility and her breasts.
“one of the things that i learned is that you need to go to every appointment with them to actually hear what the doctor’s saying. jacs was so overwhelmed with so many things going on in her head, trying to sort out all of this technical information and scheduling. you just need to be there.”
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since they both wanted kids, they decided on freezing embryos, a procedure to remove eggs from her ovaries and fertilizing them to create embryos that are frozen for implantation at a later date. carter also decided on a mastectomy to remove both breasts since leaving breast tissue intact meant a greater possibility of the cancer coming back. and she decided to have breast reconstruction surgery at the same time.
“that whole process moves so quickly where you have your initial consultation with the surgeon to talk about the options,” he says. “decisions, especially like a mastectomy, is a huge change. i love jacs, so i said, ‘whatever makes you feel most comfortable, i’m here for you.’ you just have to take it as it comes, moment by moment.”
treatment for breast cancer during covid pandemic
to add to the stress, her surgery happened during covid-19, so no one was allowed to come with her for support, leaving grill-donovan feeling even more helpless because he couldn’t be by her side.
next came chemotherapy sessions every two weeks for two months where she became extremely tired and nauseous, even with anti-nausea medication. she would be relatively okay after the treatment and then went into decline for a number of days that were spent sleeping and resting. after a short break after chemotherapy, she started daily radiation treatment for several weeks, which also left her weak and resting most of the time.
they had moved into the new house and also got a dog, willow, who liked to nap with carter on the couch. they had the support of friends and family bringing food around or staying with carter so that grill-donovan could go for a bike ride or float in a floatation tank for relaxation – those breaks from the caregiver role made all the difference to his mindset and energy level. he also took meditation breaks that he adopted as part of his routine. “i just had to let her feel the way she’s feeling, and to give her the space to be sad and to say that she feels terrible. it’s tough because there’s still a house and there’s cleaning and cooking that all needs to be done.”
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carter was off work for a year and then started back on the job part-time, increasing her work time over the past year. however, she still has a lot of fatigue and brain fog. still, she is also active in advocacy for breast cancer patients as the hr-positive breast cancer ambassador for the canadian breast cancer network, a national patient-driven breast cancer health charity.
while her treatment has been successful, there’s still drug therapy and monitoring that may continue for five or more years. she takes a daily tamoxifen pill to block the effects of estrogen so it can’t signal possible cancer cells to grow and multiply. she goes into the cancer centre once a month for a lupron injection that keeps her in chemical menopause. basically, it shuts down her ovaries and stops them from producing estrogen so there is less estrogen to fuel the cancer growth. and every six months, she has an appointment for zometa, a bone strengthening infusion delivered intravenously in the chemotherapy unit.
living with and caring for breast cancer
all this didn’t deter the couple from going ahead with their wedding in august 2023 and plans to pause her current treatments next year in january 2024 to try for a baby. life doesn’t have to come to a full-stop, but timelines become more fluid and flexible.
what has he learned from the experience of caregiver? that you need to make room for honesty and open communication. “you want to show your partner or the person you’re caring for love with patience and acts of kindness, and to be honest about how you’re feeling,” he says, adding that being patient with yourself is also important.
there’s a lot to be said for acceptance and carrying on.
“accept that things change and the way that you feel in one moment isn’t going to last. and the way that the person who you’re caring for feels will change as well. jacs from three years ago is very different from jacs today. she’s in such a different place now. we went for a big hike recently and that was huge for us. it was amazing.”
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if you’re a caregiver, know that you’re not alone. reach out to support groups like the canadian cancer society and the canadian breast cancer network, and share your story. healthing.ca would love to hear from you.
karen hawthorne is a toronto-based writer.
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