what it feels like: ‘a reason to keep fighting’ against ovarian cancer
9 minute read
in 2017, while she was still healthy with no trace of cancer, starla fiddler adopted her son bohdi.
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“it just came out of nowhere.”
that was starla fiddler’s reaction when she was diagnosed with granulosa cell tumour, a rare form of ovarian cancer, at the age of 23.
there was no history of any type of cancer in her family. her only symptom, she says, was having had no period for about a year. but her family doctor was unconcerned.
“i had to really push him to investigate further because he would tell me i was young and healthy, that because i was working night shifts and then day shifts my body was not regulating,” she says of her job as a nurse in saskatoon. “he told me to cut out caffeine to see if that helped.”
“i pushed for a second opinion and he referred me to a gynecologist who found a cyst on my ovary. they removed it and discovered it was ovarian cancer. at my age, i didn’t even realize that was a thing.”
while it’s true ovarian cancer primarily affects women who have gone through menopause, it can strike at any age.
what is ovarian cancer?
ovarian cancer is categorized as a group of diseases that originate at or near the ovaries, according to ovarian cancer canada (occ). the group includes epithelial, germ cell, stromal cell, fallopian tube and primary peritoneal cancers. epithelial is the most common type, accounting for 85 per cent to 95 per cent of cases, and starts in the cells that cover the lining of the fallopian tube or ovary.
fiddler’s type accounts for only five per cent of primary ovarian tumours, according to the cleveland clinic. granulosa cell tumours (gct) can occur anywhere in the body and the majority are not cancerous, but for those that are, outcomes are poor, according to memorial sloan kettering cancer center. because gct of the ovary is so rare, researchers still don’t know what causes the tiny granules within cells to form, but they generate higher than normal levels of estrogen.
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everyone born with a set of ovaries, the two almond-sized reproductive glands located on each side of the uterus, has some risk for ovarian cancer. according to occ, those at higher risk include women aged 50 to 79, those of ashkenazi jewish, french-canadian or icelandic/dutch descent, those with a history of endometriosis, a family history of certain cancers, or those who test positive for the brca1 and brca2 gene mutation, which are linked to both hereditary breast and ovarian cancer (women who have been diagnosed with breast cancer have a higher risk of developing ovarian cancer).
according to ovcare, an ovarian cancer research group within the vancouver general hospital and ubc hospital foundation, each year more than 3,100 canadian women will be diagnosed with ovarian cancer and more than 1,950 will die from the disease. even grimmer, seven in 10 will die within five years of diagnosis.
“that [statistic] has not changed in 50 years,” says alicia tone, scientific advisor at occ. “our driving force is to try and change that. ovarian cancer is less common than breast cancer but it has a worse prognosis. breast cancer survival has improved over that same period whereas ovarian cancer has remained steady.”
“no reliable screening method” for ovarian cancer
because symptoms — which include abnormal uterine bleeding or postmenopausal bleeding, bloating, irregular or absence of menstrual cycle, feeling full fast after eating, changes in urinary habits — can mimic other conditions, ovarian cancer often goes undiagnosed.
when it is detected, it’s usually at a more advanced stage, leading to poor outcomes. current screening tools, which are woefully imperfect, include ct scan, mri, transvaginal ultrasound, or a blood test that measures the amount of a protein called ca-125 in the blood (many women with ovarian cancer have high levels of ca-125). it is not, as many mistakenly believe, diagnosed via pap test, which is used to screen for cervical cancer.
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“ovarian cancer is so complicated that there is no reliable screening method,” says tone. “there have been countless trials including hundreds of thousands of women and, unfortunately, ca-125 and transvaginal ultrasound screening do not reduce death from ovarian cancer.”
dr. david huntsman, canada research chair in molecular and genomic pathology and professor in the departments of pathology and laboratory medicine and obstetrics and gynecology at ubc, says.
“the challenge with [screening] ovarian cancer [is] it comes in most, or maybe even all, cases from the fallopian tube, either directly or indirectly. and by the time it’s growing on the ovary, it’s likely already spread. so there isn’t a window of opportunity where there’s a tumour large enough to detect yet has not spread so you can intervene in a meaningful way.”
motherhood, the recurrence of a granular cell tumour, and a reason to fight
granular cell tumours are rare and usually not cancerous, but for starla fiddler, now 36, it was.
after diagnosis, she underwent surgery to remove her ovaries and fallopian tubes, then started chemotherapy. she was happily cancer-free for five years, until one day at the gym she says she felt a kind of ripple across her midsection.
“i had a feeling something was up so i saw my oncologist who did a scan and found more growth. it was my first recurrence.”
she opted not to restart chemotherapy because of how hard it was on her body, and instead had more surgery to remove the cancer in her midsection.
“i just wanted quality of life,” she says. “i was still pretty young, i was traveling. i realized at the time i probably wouldn’t be able to be a mother. i had tried fertility treatments and they weren’t successful so i had accepted that it wouldn’t happen for me.”
then, in 2017, while she was still healthy with no trace of cancer, she adopted the baby of a family member who was unable to care for him. a year later, she began feeling pain beneath her ribs.
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“i always seem to know when it’s back,” says fiddler, who, because of new baby bohdi, decided to undergo chemotherapy again. “anything i could do to buy more time with my baby.”
while she was receiving treatment, fiddler’s parents cared for her son. “my mom would bring him into my room, and i would hold the bottle while she held him because i had such severe burns on my skin from the chemotherapy. he’s definitely a reason to keep fighting. i am on my fifth recurrence and my time between recurrences is getting shorter and shorter. i am essentially on borrowed time. i’m aware that my next scan could be the one that shows the disease has progressed and there’s nothing more they can do.”
fiddler says she meets with a support group once a month and is one of occ’s patient partners in research, a group of 20 patients from across the country who consult on research priorities. she’s also on the volunteer planning committee for the annual walk of hope, which takes place this year on september 10.
“a lot of people who have been in my shoes have walked the path that i’ve walked, and then others are just starting their journey. so it’s nice to maybe be what i was looking for [when i was first diagnosed],” she says.
as a patient advocate, fiddler speaks to pre-med and nursing students and shares her journey on tiktok, where she posts videos of her ct scans and talks about aspects of the disease in hopes of raising awareness.
ovarian cancer treatments and prevention
treatment for ovarian cancer depends on the stage, grade, tumour type and whether a woman plans on getting pregnant. but generally surgery, chemotherapy, radiation, and/or hormone, immunotherapy or targeted therapy are standard.
because most ovarian cancers originate in the fallopian tubes and not the ovaries, and because screening is so unreliable, doctors sometimes recommend those with average risk to consider proactive measures, such as having their fallopian tubes removed when they don’t plan on getting pregnant or are finished having children. the procedure leaves the ovaries intact, which produce hormones that reduce the risk of heart disease, osteoporosis and sexual dysfunction later in life. but in women with brca1 and brca2 genetic mutations, it’s generally recommended to remove both the ovaries and the fallopian tubes.
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in fact, removing the fallopian tubes during another pelvic surgery, such as hysterectomy, is standard care in b.c.
“if a woman has a high risk of ovarian cancer, such as a brca or similar mutation, then there’s a real imperative to try to prevent those cancers by doing surgery, which could be removal of fallopian tubes and ovaries,” says huntsman. “or it could be a timed procedure, which is being trialed right now, where fallopian tubes are removed first and then, after menopause, ovaries. if a woman has no perceived increased risk, it is unlikely it would be justified for her to undergo surgery, because every surgery has risks. however, if somebody is having surgery done for some other reason it makes total sense.”
huntsman, who is also the co-founder and director of ovcare, says his current research focuses on how to identify women with moderate risk of ovarian cancer, including those with a combination of family history and being of a certain ethnic heritage.
“i collaborate with groups who are trying to develop novel ways of screening to increase the sensitivity so they can detect these tiny lesions in the fallopian tubes, but it’s a very high bar. the tools we have now are not good enough. and yet we can do stuff to prevent cancers in a lot of women with what we have right now.”
at the risk of sounding controversial, he says the “use of the birth control pill has probably saved more women from dying from ovarian cancer than all medical interventions, resulting in a 50 per cent reduction in risk.”
the search for a cure: tackling long-term survival of ovarian cancer
alicia tone says that, although there is still no cure for the disease, researchers understand so much more about the different types of ovarian cancer than they did 20 years ago.
“unfortunately, that has not yet translated into improved long-term outcomes for patients, but we’re doing better in the short term for women living disease-free for longer and having better quality of life,” tone says. “now we need to tackle the long-term survival by understanding how we can detect it earlier and further channel treatments to the individual patient. there’s also a lot of work going on to figure out new ways to screen.”
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occ has many projects in the works, including research that focuses on prevention, diagnosis, novel treatments and survivorship, as well as six clinical trials studying precision medicine.
“the number one uniting factor is that we want to prevent ovarian cancer in as many people as possible while all this other work is going on,” says tone. “these treatments are great in terms of helping people live longer, but if we can avoid [getting it] from the beginning, that is optimal.”
tone encourages those with the disease to undergo genetic testing, which can help with treatment decisions. for instance, if someone with ovarian cancer has the brca1 gene mutation, they are more likely to respond to a very specific type of targeted drugs called parp inhibitors.
“the chances of them doing very well for very long is quite high if they know that information,” says tone. “and if they know they have a mutation, the next step is to make sure their family is tested for that mutation. there’s a 50-50 chance that a mutation will be passed down, so if a mom has ovarian cancer, her daughters and sons should be tested. if the daughter has a mutation she has an opportunity to prevent ovarian cancer and breast cancer as well. the sons should be tested even though they don’t have ovaries because there are other cancers they could be at risk for and they could pass it on to their daughters. genetic testing is the number one way to decrease incidence and mortality because it really helps with prevention and treatment.”
meanwhile, starla fiddler uses her “borrowed time” to advocate for others, raise awareness and help however she can to end ovarian cancer. “i know that in my lifetime i will never see a cure, as much as i would like to,” she says. “so if my voice can be heard to help with finding a screening tool, how amazing would that be to know i had a little part in that?”
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robin roberts is a vancouver-based writer.
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