what it feels like: cancer never leaves you

teresa tiano had most of her stomach removed, leaving her as a tiny version of her former self. linda taylor, an active healthy non-smoker, was shocked by a diagnosis of lung cancer that also brought years of the underlying dread of its return. and stacy zelazny was just in her mid-30s when she felt a lump in her breast and discovered she was a rare brca2 gene mutation carrier.

cancer can look very different depending on the type and the nerve-racking decisions about treatment. for patients and their families, the journey takes courage.

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teresa tiano

teresa tiano lost both her parents to cancer by the time she was 30. her dad died at age 65 of metastatic colon cancer and her mom died when she was 69 from a brain tumour. still, tiano’s own health was good, except for digestive issues through her young adulthood. because of family history, she was regularly monitored and proactive about check-ins with her doctor. in the summer of 2011, though, she was just feeling off and had a sense that something was wrong. her doctor scheduled her for an endoscopy and colonoscopy, procedures that examine the digestive tract.

“i was overweight at the time, so no issues eating. i was 44. because of my family’s colon cancer, they thought it was the time for me to get the tests,” says tiano, 57, of toronto. the diagnosis took her completely off-guard. she had stomach cancer, a rare cancer estimated to claim the lives of 2,000 canadians in 2023, according to the canadian cancer society.a tumour grows into nearby tissue in the stomach, which is your muscular j-shaped organ in the abdomen that holds and breaks down food. the tumour can also spread to other parts of the body, so early detection is lifesaving. unfortunately, if you don’t have any symptoms, it can go undetected.

for tiano, it was good and bad news, she laughs: “i was pretty well-read in cancer but i had never heard of anyone having stomach cancer.” the proposed treatment was also, “a very dark picture for me. he basically said to me, ‘i have to open you up completely. you’ll probably spend two to four weeks in the hospital, and you’ll be lucky if you’re up and walking in any kind of normal capacity in six months.’ the whole thing was like a blur.”

she decided to get a second opinion and was glad she did. the surgeon said he would do laparoscopic surgery, far less invasive, where a thin lighted tube with a video camera is inserted through a small incision. she would be up and walking and out of hospital within a week. so the september surgery removed 80 per cent of her stomach. however, her cancer was stage 2 and had spread to a lymph node, with a 30 per cent chance of a five-year survival rate. she was referred for chemotherapy and radiation at st. michael’s hospital in toronto as insurance because the surgery hadn’t removed all the cancer.

so what is life like without most of your stomach?

“there was a lot of pain and excessive weight loss. i lost 95 pounds and went down to a size zero. it was so bad that every week when i was doing my radiation, my body was shrinking. diet and nutrition were really tough. i had to learn how to eat again as if i was a baby with tiny meals. i was one of the lucky ones because i actually went directly to softer foods.”

the condition also comes with a risk for deficiencies in iron, vitamin d and b12, and complications like extreme abdominal cramping that sent her to the er for treatment. she talks about the huge psychological impact because of issues with food. “some foods that i love, i could not eat again. it took me eight years to be able to eat spaghetti with tomato sauce. and i’m italian, so it’s a bit of a nightmare for me.” she still experiences episodes of vomiting.

“food is life. food represents socializing and going out. i couldn’t drink and eat at the same time. for the first two years i was petrified of going to a restaurant.”

that november, her specialists recommended genetic testing for lynch syndrome, also prevalent in her family, which puts people at higher risk of certain cancers. she had a hysterectomy to avoid any spread to her uterus and ovaries, and started a process of yearly monitoring with bloodwork, ct and mri scans and ultrasounds. she also developed bladder cancer and ureter cancer, requiring two further surgeries.

an understatement, cancer has changed her life. while she couldn’t work through all this, she co-founded my gut feelingin 2016, a volunteer-led non-profit to support patients and create awareness – an organization to which she’s devoted her focus and tenacity.

“we’ve moved the dial when it comes to patient advocacy and patient voices being heard within the medical community,” she says of educational conferences where speakers include both healthcare providers and patients and caregivers.

“when you are diagnosed with this cancer, it’s a lethal cancer, so just surviving it is upbeat. then going through everything that you go through. being able to support patients has been tremendous. they need caregivers and survivors. we do peer to peer support from diagnosis through survivorship and, unfortunately, death.”

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linda taylor

work stress can take a physical toll and linda taylor thought her hectic job in human resources was causing pains in her left shoulder. she went to her doctor who assured her it wasn’t her heart but ordered a chest x-ray to investigate. he called her the night of her x-ray to let her know she had a spot on her lung and asked if she’d ever had pneumonia which can cause scar tissue on the lung. she hadn’t.

taylor was an active 56-year-old stouffville, ont. woman back in 2006 when her ct scan at north york general hospital in toronto revealed a tumour on her lung. her specialist said it was likely non-small cell lung cancer which she was told, on the upside, is very slow-growing and doesn’t spread rapidly to other organs. she’s one of the 20 per cent of lung cancer patients who are non-smokers. while it’s one of the most common and deadly cancers in canada, the lung cancer mortality rate is declining faster than any other cancer, thanks to advances in prevention and treatment.

“my first thought was ‘okay let’s do surgery and remove it.’ that was my mindset,” taylor recalls. “when [her surgeon] said we can do surgery, which was my best chance, i was ecstatic.” in preparation, she had a series of tests over the next six weeks. this was at a time before pet scans for cancer detection were widely used, so samples from lymph nodes were taken by a surgical cut across taylor’s throat, leaving a scar that’s mostly faded over the years. “i also had full body scans and brain scans because lung cancer can go to the brain, that’s one of the places it goes, so i had all kinds of tests where i was injected with radioactive material for the scans.”

she explains that her surgery in may required a lung resection where the whole middle section of her lung was removed and the top and bottom were stitched back together. she was in intensive care for a few days and then in hospital for eight days, but all went well until she learned from the surgery pathology report that a cancer cell had been found in the lymph node beside the tumour – the cancer had started to spread. the next step was 16 weeks of weekly chemotherapy, much different from today’s usually protocol of cycles of chemotherapy with rest weeks in between. the antinausea meds now administered weren’t yet available and taylor struggled with constant nausea.

“i was so sick,” she says. “i lost about 10 pounds. i couldn’t eat – i did have one bad bout where i was vomiting and passed out and my husband called an ambulance, and they took me to hospital and hydrated me.” following the er upset, a nurse came to her home to give her a hydration treatment once a week during the remainder of the chemotherapy.

a high point was being able to pause the chemo to attend her daughter’s wedding that september. she bought a wig to cover her hair loss and enjoyed the festivities to 10 p.m. on the big day. “it was great,” she says. she also returned to work the next january, part-time, but after a month, she made the decision to retire in june. she and her husband steve took a dream vacation to tahiti and bora bora to celebrate.

after that summer, with her husband and friends still working, she decided to pursue part-time work again, which led to a job with a home décor resale store in stouffville. she did retire five years later.

for the first two years following her lung surgery, she went to see her surgeon every three months and then the following three months she would go to the oncologist for ct scans for monitoring. then it became once a year. “i think that was the worst. mentally, you’re thinking, ‘okay, did they find anything?’” now her family doctor oversees her surveillance and a recent chest x-ray showed all was fine.

“it made me thankful for what i have,” taylor says of her cancer. “it changed my attitude. you don’t sweat the small stuff. it made me really focused on friends and family – they’re what’s most important. i was lucky enough to see two granddaughters born, the oldest who is now 15. it’s hard to believe.”

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stacy zelazny

for stacy zelazny, her breast cancer diagnosis in 2020 has meant a lot of ups and downs. a recent “traumatizing” infection sent her to hospital for emergency surgery last december.

“on christmas day i went septic. i had an infection that was trying to kill me, in other words. it was an infection in my right reconstructed breast that was just sporadic. it had started back in october,” says zelazny, a midland, ont.-area mom of two girls. she and her husband had celebrated their 15th wedding anniversary with a trip without kids to banff, alta.

“i had started getting a cold while i was out there, but then i ended up with swelling on my one side.” back home in late october, she was admitted to hospital and put on iv antibiotics, “but they couldn’t figure out what the infection was,” she explains. on christmas morning, she woke up with a bad headache and felt completely off, thinking perhaps it was from staying up late wrapping presents. then her arms felt sore and the swelling on her side flared up again. she drove herself to the hospital, hoping for a prescription and then a return to her family, but she ended up in surgery.

“they actually had to remove all my right-sided breast reconstruction. i’d never been flat before, so it was like, what is this? but they solved the infection. it ended up being a random strep b infection that was hiding in there.” for the next six to nine months, she needs to heal completely – although she says she’s bored at home – before she can have an extreme reconstruction of the breast with a new implant.

it’s also the breast where she first felt a lump, but she was too young to qualify for a mammogram and had no history of breast cancer in her family. at her annual physical exam that fall, she pushed for an ultrasound but there was nothing detected. “then i was always touching it because i was noticing it’s starting to get slightly bigger. so then in january, i thought, ‘this thing grew from the size of a pea to a mcdonald’s chicken mcnugget.’”

she requested another ultrasound and asked the clinic radiologist for a mammogram. two weeks later, her family doctor called to let her know there was something there and ordered a biopsy. it turns out, she had invasive breast cancer and needed surgery to have it removed.

should she have the lump taken out or both breasts removed because of the possibility of the cancer spreading? through consultations with surgeons, she learned more about genetic testing.

there is typically no survival benefit linked with a bilateral mastectomy, but for women who have a brca1 or brca2 gene mutation, this procedure can reduce the risk of dying of breast cancer by 50 per cent. a program through women’s college hospital in toronto offers rapid genetic testing by mail and within days, the results of her saliva test showed that she is a brca2 mutation carrier. she started with chemotherapy and then went ahead with the bilateral mastectomy followed by radiation.

“you get through the worst, you do your chemo and you do your radiation which has lifetime side effects,” zelazny says. the skin on her radiated side will never be the same. “it’s sensitive. every once in a while i think there’s a sword fight in my right side.”

she also tires easily but still enjoys the outdoors and the countryside, although she had to give up skiing. she’d like to return to her work as an educational assistant with the local catholic school board when she’s able to. and as for therapy, the only treatment she takes now is tamoxifen, a drug that blocks the activity of the estrogen hormone in the breast that works to stop the growth of tumours.

then there’s the anxiety and trouble sleeping, which she’s trying to curb with cbd gummies.

“sometimes, i’m lying in bed at night and my thoughts start going to ‘what if?’ my back hurt today. what if the cancer’s in my spine? you’ll forever think that way once you’ve been diagnosed, so with every infection, i’m thinking, the cancer’s back. it’s always with you.”