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living with ovarian cancer: choosing action over despair
6 minute read
sue says the hardest part of the treatment plan was sharing the news with her family. cancer in any form is scary.
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sometimes you get a second chance at life. for sue, a retired program coordinator for preschoolers, she’s thrilled she can spend time with her grandchildren and celebrate her 50th wedding anniversary in october. it’s a milestone for any marriage but especially momentous when you weren’t sure you’d be around to celebrate it.
“i think we’ll just have a nice get-together. i basically said i don’t want to go anywhere or have a big thing. our kids are planning it and there’s 22 of us, so we’ll get a big family picture taken,” says sue, who lives in eastern ontario.
she was diagnosed with stage 3 ovarian cancer in may 2021 at age 69. four years later, she’s feeling good and staying positive. she’s also learning how to play pickleball.
fortunately, sue has come out the other side of what she knows can be a very dark place with ovarian cancer. it’s one of the deadliest cancers impacting women in canada. about 3,000 women across the country are diagnosed with ovarian cancer every year, and 2,000 women will die every year from the disease, according to ovarian cancer canada. the net five-year survival rate of ovarian cancer is only 45 per cent. one of the biggest problems is there’s no screening or diagnostic tests, and symptoms of fatigue, bloating, lower back pain and slight changes to bowel habits are general and tagged as women’s symptoms that will resolve.
diagnosis of ovarian cancer is often in the later, more advanced stages
as a result, ovarian cancer is often diagnosed in the late stages when the prognosis is bleak.
sue’s experience began in the weird uncertainty of the pandemic when the vaccines were just coming out. she got her vaccination but felt achy and miserable for longer than she expected. worried, she went to her doctor who confirmed that the after-effects of the vaccine shouldn’t continue for more than a week or two and sent her for blood work that led to an ultrasound. “and that’s when they saw something,” she recalls as her worry started to spin.
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next came the nerve-racking drive to ottawa with her husband gary to see the oncology team in the cancer program at the ottawa hospital. she had further ultrasounds, cat scans, and then a biopsy. she was told she had ovarian cancer.
“that was a shock, but at that point, i was almost at peace with it,” she says, well aware that her appointments at the cancer centre would likely confirm a cancer diagnosis. so, she could either break down in despair or focus on taking action. the latter is what many choose out of necessity.
“i was really anxious as to what we were going to do about it.” it wasn’t stage 4, the most severe stage, but the cancer had spread from the ovaries to the lymph glands, so it was serious although it hadn’t advanced to any other organs, like the liver, kidneys or bladder.
by june, she and the gynecologist, with input from a team of doctors (so she felt tremendously supported and cared for), decided to do four rounds of chemo to shrink the tumour and the cancer cells in her lymph nodes. the treatment would be followed with surgery to remove the cancer, and then three more rounds of chemo as insurance to be clear of cancer.
hardest part of cancer is telling your family
the hardest part of the treatment plan was sharing the news with her family. cancer in any form is scary. “i think it was difficult for my husband because as the person that’s been diagnosed, you know you’ve got a plan. you know what’s going to happen. but it’s really hard on everybody else because they’re on the sidelines watching and not knowing what to do.” her oldest grandchild was seven at the time so she decided to tell her children and let them share the news with their little ones. “i don’t think i could tell them without crying. i could tell my kids, but not the little ones,” she says.
she wanted everyone to know that the next year would be different with her going for drives to ottawa for treatment rather than going for a hike somewhere, for example. “life changes, but we all learn to live with it.”
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her “chin up and carry on” mindset would see her through, but what she found surprising was how common ovarian cancer is. the more women she talks to about it through ovarian cancer canada support groups and advocacy, she’s found that these women were “doing everything right. and then all of a sudden they had ovarian cancer” much like she’d experienced. the exact cause isn’t known, but the risk increases with factors including age, inherited genetic mutations, family history of ovarian or breast cancer, obesity, endometriosis and hormone replacement therapy.
sue, like many unsuspecting women with ovarian cancer, was always an active person and health-minded when it comes to eating and learning new skills like painting in watercolours.
chemotherapy, surgery, then chemotherapy for stage 3 ovarian cancer
sue responded well to the chemotherapy and then had her surgery that september, which was a complete hysterectomy and removal of the lymph glands that were affected. it was successful as far as the cancer went, but there was another problem. “i think in a normal situation, you might go home after three days, but what happened to me was when i woke up from surgery, i got up to go to the bathroom. they were going to help me and i had no feeling in my left leg,” she recalls.
something had happened to the nerve during surgery which kept her in hospital about five days and left her reliant on assistive devices. she worked with a physiotherapist during her stay and then was transferred to a rehab centre closer to her home. after 12 days of rehabilitation work, she could walk with a walker and went home. luckily, the nerve damage was temporary and all the feeling in her leg eventually returned.
now she no longer needs a cane.
her journey with ovarian cancer has had its ups and downs. while she’s heard the horror stories of the sickness, lethargy and hair loss that often comes with chemotherapy, she fared better than most. her husband drove her to a hotel in ottawa every three weeks to stay over for the six-hour chemo treatment the following day at the cancer clinic. the cancer antigen ca 125 blood test that she first had a diagnosis revealed a 1,000 count (35 and under is considered normal). everyone has cancer cells in their body.
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“at the end, i was right down to 11 or 12 [result in the blood test], so they consider that no evidence of disease. i’ve been like that ever since,” she says. her maintenance treatment is an oral pill taken once a day at home for three years since. now she’s moved to monitoring by her cancer specialist with a visit to ottawa every three months that includes the blood test. if the ca 125 count goes up, that’s a warning and further testing will follow.
cancer doesn’t leave you, so find ‘your happy place’
four years post-diagnosis, what’s the possibility of the cancer coming back?
“it’s always in the back of your head. like you don’t every get away from it, but at the same point, every day that you are further away from it you’re able to let it go. so it’s not so intense. you’re able to live your life a little better and plan things.”
her advice to others, too, is staying positive and connecting with the valuable resources at cancer clinics which have social workers, dietitians and pharmacists. she also recommends connecting with ovarian cancer canada and wellspring cancer support so you can lean on professionals and others with lived experience. having a loved one with you at appointments is also a huge boost. “ask questions. take somebody with you every time you go to an appointment, because they’re another set of ears,” she says, adding the importance of working with your cancer team to have a good plan in place.
“there’s so much research being done, it’s amazing what’s happening around the research and the new discoveries, like these maintenance drugs, they’ve come a long way.”
her cancer has changed her in a way that makes her live with intention—something we all could learn from.
“i feel really good right now. there’s a lot to staying positive. i think your outlook is what you’re thankful for, just the smallest things, you’re more aware that things are precious. you learn to stay in your happy place.”
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