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ovarian cancer at a crossroads: late diagnoses, new treatments and the fight for awareness
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liz rykert (right) was on a vacation to france with her husband when she experienced her first sign of ovarian cancer—a postmenopausal period.
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liz rykert, who dedicated her professional life to social change in various business sectors, retired in 2018 to pursue other passions. while she loved her work and enjoyed being part of big projects that brought about real change, she wanted to have more time to see the world and all that it had to offer outside of her career.
about a year later, she and her husband were on a trip to france when the very first sign of ovarian cancer presented itself. she felt as though she was getting a period, and at 10 years postmenopausal, that was not something she expected.
“i looked at my husband and i’m like, ‘there’s a big problem,’” she said.
they were on a bus at the time, making their way down to the south of france for a two-week stay—a stay that was put on hold because she had to make her way to the hospital to find out what was going on.
the hotel they were staying at helped them get in to see a specialist. the entire process went quickly, from when they were on the bus to back to their hotel and then straight to the hospital dedicated to gynecological health. she was quickly seen, had an ultrasound, and found out that there were a couple of big cysts that required more follow-up to figure out exactly what was going on.
“i’m like, ‘should we go? like, should we go home?” said liz. “she said, nothing’s going to happen in two weeks, so if you can, just go and enjoy your vacation as long as your doctor’s ready with all the follow-up when you get home, don’t wait.”
and so, liz and her husband enjoyed the south of france, made their way home and got her ovarian cancer diagnosis shortly after.
liz, like the many other women who are diagnosed with ovarian cancer, was diagnosed with a later stage of the disease. the symptoms that do appear, if at all, are often so vague in the early stages that people don’t really take note of them as a warning sign of a nefarious disease.
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dr. shannon salvador, a gynecologic oncologist with the jewish general hospital in montreal, quebec, notes that early diagnosis is challenging due to the lack of signs and screening.
“unfortunately, things like bloating, change in bowel and bladder, where they might get constipated, might get diarrhea, their clothes aren’t quite fitting the same, maybe not sleeping as well. it’s all this vague-ish stuff, which of course could be any number of things,” she said.
she notes that when those symptoms arise, people are already in stage 3 or stage 4, just like liz had been when she was diagnosed with stage 3b ovarian cancer.
“on the other sad side of that is there’s just no screening test. it’s funny because ovarian cancer is a bit of a misnomer. most of these cancers probably start in the fallopian tube,” she said. “our best scanning modalities can only pick things up that are maybe about half a centimetre to a centimetre in size, and if we’re talking about a little cluster of cells, you just can’t find that.”
blood testing also doesn’t work along with other routine scan methods, so any diagnostic technology that could “make a clinical difference to a patient” just isn’t available.
the issue is that ovarian cancer is highly lethal, and while the overall prevalence rates are low at roughly 3,000 people per year, approximately 2,000 of those people will die because of their disease. but if early intervention were possible, those mortality rates may paint a different story.
now, however, even with better screening and diagnosis interventions stuck in the research phase, advancement has been made in treatment with a new drug known as elahere. it was recently approved by health canada to treat certain types of platinum-resistant (resistant to platinum-based chemotherapy drugs) and recurring ovarian cancer, helping those who don’t respond to first-line therapies have a better overall chance at a longer life.
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treating ovarian cancer for better survival
while liz was waiting for her treatment, her body was feeling the changes caused by her ovarian cancer, so much so that she had two periods. it was like the cancer had tricked her body “back into thinking i needed to have a period.”
the cancer had also metastasized into areas of her peritoneum, a thin membrane that lines the abdominal and pelvic cavities. she counted herself a bit lucky in a sense because although the cancer had migrated into other areas of her body, she had only five metastases, whereas in many cases, “you could have thousands.”
when liz began her treatment, she was put directly into surgery to have the tumours removed. according to her, “the surgery went really well,” and once she healed from that, she was on to chemotherapy infusions to tackle the cancer left behind.
“i had intravenous infusions every three weeks, and then i had intraperitoneal infusions. they put a catheter with a port right under your skin, under your ribcage, and after you’re finished with your iv infusion, they plug that in, and the chemo is warmed up, and it just goes right in and floats around in among your organs in the peritoneum,” she said.
afterward, liz was tasked with performing a process known as “rock’n’roll,” where she had to spend the last hour of her treatment session moving around through various positions.
“you feel like a beached whale when you walk out of there,” she said. “it was pretty intensive, but i got through it.”
for the following six months, she had to repeat the process to treat her cancer, and after she was finished around thanksgiving 2019, it was time to go on another trip, this time to barbados.
for liz, her chemotherapy and surgery did the trick, and she has gone into complete remission since then. but recurrence, something that many women deal with after being diagnosed with ovarian cancer, was always on her mind.
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“it is one of those things you really worry about. this particular cancer … is very persistent. they won’t give you a cure diagnosis. they’ll just tell you that there’s no evidence of disease,” she said.
recent breakthroughs that extend survivorship
as many as 70 per cent of people diagnosed with ovarian cancer will have to deal with it returning after treatment, and when that happens, there are no treatment avenues they can take.
“if someone’s ovarian cancer recurs, we can’t cure you. we’re not there. a recurrence means that person is always going to have ovarian cancer for the rest of their life with our current knowledge,” said dr. salvador. “our only chance for cure is really in the upfront setting. that is the point in time where we can potentially cure you.”
specific types of drugs that have only recently become available can already be effective in ovarian cancers with specific mutations, such as parp inhibitors for the brca mutation, when given as a first-line therapy.
elahere, the most recent breakthrough in ovarian cancer treatment, can change the future of ovarian cancer treatment for those who experience folate receptor-alpha (fra) positive platinum-resistant types at a response rate of roughly 35 to 40 per cent, according to dr. salvador.
“when you’re looking at someone who’s already had multiple lines of chemotherapy, because our usual response rate at that point in time is less than 10 per cent, it can be really low,” she said, noting that the new response rate has “made a huge difference in people” who continue to develop a stronger resistance to chemotherapy drugs, making it far more likely to increase long-term survivorship for more people with ovarian cancer.
the hope is that ongoing research into the drug will allow it to be used as a first-line therapy, much like parp inhibitors, for specific cases of ovarian cancer.
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“instead of giving it after someone’s had multiple lines of chemo, what happens if we give it up front? how much better can we do on actually curing people of this cancer?” said dr. salvador. “the next steps are bringing it into first line, but for this point in time, when i’m looking at someone who has … a prognosis of less than three months, this is now giving them the opportunity for more than six, which is a big deal.”
continuing the call for more advocacy and research
ovarian cancer hasn’t been given the priority level it deserves, which is why these breakthroughs for treatment seem to be so far behind other cancers. a lot of that has to do with the higher mortality rates than other forms of cancer, such as breast cancer.
“there are a lot of women who survive breast cancer, so they’re very vocal, which is great. i love it. that’s what we need to be. unfortunately, because ovarian cancer has such a high death rate, we often don’t get survivors who are able to be vocal in the community and try to drive attention to it,” said dr. salvador. “survivorship is a big deal. it really makes a difference.”
for liz, who has survived ovarian cancer, using her voice to shine a light on its importance in the hopes that it will help create more breakthroughs is something she gladly does.
“with ovarian cancer, it is a disease that is frankly quite lethal and hasn’t had the same kind of attention from a research and prevention point of view, and they still don’t have a lot of really good tools,” said liz. “you’ve got to find researchers who are interested in working on it. you’ve got to encourage them. you’ve got to create conditions where big grants are going to them to do the kind of primary research that needs to be in place in order to get it to a stage where it can be tested.”
in the meantime, liz hopes that others with ovarian cancer can find the support and other outlets they need to go through treatment and the emotional turmoil that comes with an ovarian cancer diagnosis.
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she tapped into support through wellspring, watercolour painting and exercise as a means to care for herself and finds that one important thing is not letting cancer define you.
“it’s interesting talking about the cancer again because i sort of let a lot of that go. it’s like i don’t need to be defined by my cancer or by other traumatic things that have happened in my life in the past,” she said. “i’ve learned to just let that go, and that’s been very freeing and fantastic. i think it’s really helped me just to live the fullest life i can.”
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