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what it feels like: stage 4 breast cancer is ‘incurable but it is treatable, so here i am’
8 minute read
bobbi jo beitz is the first to admit that breast cancer is not an easy road to go, but getting up and going is the best advice she wants to pass on to others.
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bobbi jo beitz went from being an incredibly active fastball and hockey player to gentler hobbies like photography and birdwatching to enjoy the outdoors and make the most of the days. she joined a dragon boat team, but couldn’t paddle this year because her chemotherapy zaps her energy and she needs to take it easy.
she says her sense of humour and light-hearted outlook is unsinkable. she’s survived stage 4 breast cancer, a diagnosis in 2019 that meant the cancer had spread, or metastasized, to other areas of the body – and it continues to spread.
“i call myself a dalmatian. i have spots everywhere,” says beitz, 53, from brantford, ont. “unfortunately, now this ‘crap,’ as i call it, has gone into my liver as well.” she remarkably takes it all in stride and wants to share her story so that people will have a better understanding about late-stage breast cancer and how to cope.
“whenever anyone hears ‘stage 4,’ the first thing they think is, ‘holy cow, you’ve got one foot in the grave. death is around the door.’ but stage 4 just means that it has traveled from its point of origin to various other parts of the body. the other unfortunate thing is that it’s incurable but it is treatable, so here i am.”
about six to 10 per cent of new breast cancer cases in canada are initially diagnosed as stage 4, so it’s not as common for the estimated one in eight women who will develop breast cancer in their lifetime. the five-year net survival rate for female breast cancer diagnosed at stage 4 is 23.2 per cent, according to the canadian cancer society, considerably lower than earlier stages.
beitz is one of the luckier ones, as she’s quick to point out, at four years post-diagnosis. in general, approximately 20 to 30 per cent of women diagnosed with breast cancer will have it metastasize, which is the primary cause of therapy failure and death for the majority of patients with all types of cancer.
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understanding a breast cancer diagnosis
and for many women, a breast cancer diagnosis doesn’t come with feeling a lump in the breast or underarm. it can be detected on a screening test, such as a mammogram, or some women will experience other less common symptoms like back pain or other pain. this was how it started for beitz, who at 49, had never gone for a mammogram that is recommended by national guidelines to be done every two to three years for women between age 50 and 74. the canadian task force on preventative health care has updated its recommendation for screening every two to three years for women age 40 to 74 who are not at increased risk. those with a family history of breast or ovarian cancer or suspected genetic mutations like the brca1 and brca2 genes should talk to their doctor about annual screening starting as early as age 30.
“my inkling that something wasn’t quite right was in the summer of 2019 when i started getting this really weird numbness in my right heel. all i thought was after years of playing various sports, it probably had something to do with the sciatica and nothing to worry about,” she recalls. the sciatic nerve is the largest and longest nerve in the body, starting at the base of the spine and running through the hips and buttocks and down the back of each leg into the foot. sciatica refers to pain, weakness, tingling or numbness caused by injury or pressure to the nerve. while it may be caused by things like a slipped or herniated disc or pelvic injury, it can also be caused by a tumour.
beitz remembers the numbness that began in her heel becoming painful and strangely going up into her buttocks as well. she was seeing a chiropractor for tightness in her lower back and pelvis and mentioned the symptoms which sparked immediate concern. he thought it might be a serious nerve issue and advised her to see her family doctor as soon as possible for tests. she got an appointment with her family doctor shortly after in early october who referred her for an mri and a nerve test. both were scheduled for early january 2020. beitz wasn’t worried about the wait for testing until she went to her physiotherapist who was helping her with an unrelated problem in her knee. she decided to ask him about her sciatica, just for another medical opinion.
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he asked her to stand on one foot and go up on her toes and then repeat it on the other foot. she assumed it would be simple because she’s fit and strong.
“i could do it on my left foot, no problem. but on my right foot, i had absolutely no strength at all in my right leg. i could not get my heel off the ground. i said to him, ‘what the hell is going on?’ he didn’t know either.”
unnerved by the experience, beitz called her family doctor again and got in a day or two later to show her what was happening in her right leg. her doctor was concerned, too, and expedited the nerve test for the following week. sitting on the examining table, beitz overheard the doctors discussing evidence of nerve damage and deciding to reschedule the january mri for the next few days.
“by now, my heart’s starting to beat a little bit faster,” she says of the mounting worry and uncertainty. later that day, she was called to come for the mri on the sunday morning and that monday, she went in to see her family doctor – with one of her sisters for support – to discuss the results. she was told the reason for the numbness was a 6.8 cm mass in her sacrum, the triangular bony structure at the base of the spine.
“all i heard was the word ‘mass’ and it scared the crap out of me, because i’m like, ‘i don’t want this, get this out.’” a ct scan followed a week later that revealed a tiny 2.3 cm lump in her left breast, which was the primary source of the cancer. the good news was that while the cancer had spread to some bones, it hadn’t spread to any organs.
“i felt relieved because now we knew the source of what was happening, so that understanding was at least something,” she explains. the nerve pain got worse, running up and down her legs and waking her up at night. while her boss was supportive, beitz was exhausted getting up in the morning and going into her job as a community program secretary with the city of hamilton. she went on medical leave and has not been able to return, thankful for the long-term disability benefits she still receives. “i miss my job and the people,” she says. “i still talk to the people i work with, but i really do miss the job.”
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from breast cancer diagnosis to treatment options
next, her family doctor scheduled her for a mammogram, ultrasound and biopsy, all on the same day, to get things moving fast. soon enough, beitz was at the hospital in nearby hamilton with her husband to talk to the oncologist about treatment. it started with nerve pain medication and then five days of radiation to the sacrum area which stopped the nerve pain completely.
when people hear about breast cancer, the assumption often is surgery first, then chemotherapy and radiation, but that’s not the go-to for every case. beitz asked the oncologist in hamilton about surgery for her stage 4 breast cancer and the doctor explained it wouldn’t help because the cancer had already travelled and done its damage. she would need the right drug treatment to help kill the cancer cells and stop it from spreading further.
she was referred to dr. bryan lee, a medical oncologist at brantford general hospital, closer to home to make her treatment regimen more manageable. what struck her most about lee was his kindness and compassion, something she knows others in her position would benefit from.
“the first thing i remember him saying was, ‘it’s nothing you’ve done, nothing you could have prevented. it’s just bad luck.’ i still remember that. he is so sweet. i have been super-active all my life and i didn’t plan on stopping. there’s zero history of breast cancer in my family, absolutely nothing.”
ups and downs of chemotherapy
the ups and downs of chemotherapy have been a part of her patient journey ever since, lightening her eyebrows and turning her hair grey and curly when it grew back after losing much of it after the first round of chemotherapy. as one drug would stop being effective, lee would move her to another drug, monitoring her progress with bone and ct scans every three months. she’s met others on the same chemo drug that are very ill as a result, but everyone reacts differently and beitz is not nauseous, only frustrated by having to slow it all down and rest.
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she began with a pill form of chemotherapy that worked for about eight months, and then started an iv chemotherapy once a week for three weeks, a week off, and then once a week for three weeks and then a week off for 13 months in total. next was an iv chemo called doxorubicin which is also known as ‘the red devil’ because of its colour and unpleasant side effects. after three months and no success, she went back on a pill form of chemo until march 2023, and now she’s on an iv chemotherapy with eribulin that works by stopping cancer cells from separating into two new cells, so halting cancer growth.
family support and a positive attitude in the face of breast cancer
how does she manage all this? the strong support of her family, including her three sisters and her brother (and three brothers-in-law), has been foundational. living with breast cancer takes mental fortitude and simply put, grit. she’s got plenty.
“it is about attitude. if you’re going to crawl under that rock, then go do it. but that’s not who i am. not a chance,” she declares. “when i was little, people always used to say, ‘oh, you’re so perky.’ and i used to hate that, but i love it now. it’s part of what’s kept me going. i refuse to stop being who i am.”
she’s the first to admit it’s not an easy road to go, but getting up and going is the best advice she wants to pass on to others.
“i’ve had my days where i cry. because you think about what you’ve lost and how your life has turned short. but i’m like, ‘nope. i’m not going to think that way.’ because you never know if you’re going to get hit by a car the very next day. nobody knows that.”
talk to your healthcare provider about breast cancer screening, and for more information and support services, visit the canadian breast cancer network and the canadian cancer society.
karen hawthorne is a toronto-based writer.
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