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diagnosed with ovarian cancer: education, advocacy and finding support
7 minute read
getting diagnosed with ovarian cancer can feel overwhelming and scary, but if you know how to navigate the system, it will make the experience a bit easier.
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getting diagnosed with ovarian cancer can be an overwhelming experience. this is compounded by the fact that it’s often not found until the later stages, leading to poorer prognoses and a higher mortality rate when compared to other types of cancer.
ovarian cancer is still uncommon as well, with roughly 3,000 canadians being diagnosed each year. since there is a low rate of incidence, those diagnosed with ovarian cancer aren’t likely to be in circles where the disease is openly talked about. this makes navigating the healthcare system after a diagnosis especially challenging.
“it’s still a relatively rare disease,” said stephanie gosselin, the national programs director for ovarian cancer canada. “about 1.4 per cent of the population will get that over the course of their lifetime.”
gosselin also notes that because the prognosis isn’t great, with as many as 56 per cent of people diagnosed dying within the first five years after diagnosis, dealing with this statistic is “the part that’s really scary.”
educating yourself on ovarian cancer the right way
after being diagnosed, a person may become extremely overwhelmed with all the information they’re given, but it’s essential to learn everything you can about the disease, treatment options, prognosis and anything else you can do to make dealing with ovarian cancer easier.
however, where you get your information is imperative.
“obviously, you want to go to a reputable source, so you want to make sure people are vetting their information,” said gosselin.
that often means going to organizations dedicated to providing up-to-date information, such as ovarian cancer canada, and health professionals, while staying off the internet because “there’s a lot of misinformation out there and there’s a lot of really scary information out there.”
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gosselin notes that patients she’s worked with have had to go “completely offline” at times to avoid falling into a rabbit hole of bad data and distressing statistics, noting that it’s always better to seek out resources that are dedicated to making living with an ovarian cancer diagnosis easier, not harder.
“finding our organization, i would say, would be the number one thing to do,” she said. “we work hard with cancer centres to ensure they know about us, but as you know, it’s hard. your appointments are short, and you don’t have a lot of time.”
ovarian cancer canada also offers a free comprehensive guide for new patients that can be accessed in both hardcopy and online, to give people a place to start when it comes to educating themselves on their disease outside of the clinic.
“you’re overwhelmed. all of a sudden, you have scans and you have tests and you have blood tests and you have to go here and you have to go there and you’re supposed to remember everything and you’re so worried about what’s happening, you forget everything. so, having a physical guidebook that you can look at when you’re ready for the information is super valuable,” said gosselin.
finding and building a care team
there will be many medical professionals on your care team to work with you to handle various aspects of your disease. you’ll want to ensure that you have a care team set up that will benefit both the clinical side, such as treatment, and the mental and emotional side of an ovarian cancer diagnosis.
your gynecological oncologist will be there to support treatments and the like. in contrast, other supports, such as a nurse or patient navigator, will be able to spend more time with you and connect you with other professionals to add to your team.
this is especially important because, as you’re going through treatment, you’ll have someone tracking your progress and following up with you regularly, but afterward, you’ll still need some medical professionals in your corner to deal with the aftereffects of treatment, such as side effects and the mental health aspect of a cancer diagnosis.
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“once you’re done with chemotherapy, it’s knowing who to contact to find out who can help you with dealing with some of the aftereffects of chemotherapy,” said gosselin. “maybe you’re deciding that you want to return back to work … so how do i prepare myself to go back to work? who do i talk to about that?”
gosselin notes that there are other vital professionals to add to your team, including a social worker who can help during and after treatment, as well as occupational and rehab therapists who can help you prepare to return to your life after treatment.
advocating for yourself
according to gosselin, people need to be prepared to advocate for themselves when navigating the system after an ovarian cancer diagnosis. that means either knowing what needs to happen when you speak to your healthcare team or knowing that you can’t speak up and require someone to come with you to do the advocating.
“you are the driver of your own healthcare team,” she said. “your voice matters, and your voice is the most important one at the table.”
sometimes advocating for yourself may also involve asking for a second opinion if you’re not satisfied with the care you’re receiving.
“i think that’s a scary thing when you’re a patient because you’re thinking, i don’t want them to cast me off if i want a second opinion. but they’re all professionals, and you’re entitled to a second opinion. this is your life that we’re talking about.”
sometimes learning how to be your own advocate also involves getting involved in a community of others who have also been diagnosed with ovarian cancer.
“different people have different sorts of tactics in terms of advocating for themselves,” said gosselin. “and you don’t know what you don’t know.”
she notes a scenario where a doctor may decide on a treatment for you, but the side effects are intolerable. a person could then reach out to someone who’s on the same drug and find out that their doctor simply lowered the dose, and the side effects became easy to deal with.
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“just being able to know that it’s okay to ask questions and it’s okay to say, ‘is there another solution or how can we work together to make sure that i’m feeling as good as i can throughout this process?’” said gosselin.
taking advantage of resources and support
resources and supports are designed to take some of the burden of dealing with ovarian cancer off the patient’s shoulders, allowing them to have someone or something else to lean on.
aside from family and friends, various organizations and cancer centres will provide support that allows people to connect with others.
through ovarian cancer canada, people can join a facebook group dedicated to helping people be a part of a discussion with other ovarian cancer survivors to ask questions, vent, or simply find a feeling of belonging, because this type of diagnosis can make a person feel exceptionally lonely.
they also offer one-on-one peer-to-peer support, monthly teal tea meetings for connection, and workshops for learning and education. these types of resources hope to help people go through the aspects of ovarian cancer that aren’t talked about in a clinical setting, and though it may be scary, it’s a crucial element in cancer care.
“it’s a scary thing to go to a support group for the first time. every single person that comes on is thankful that they’ve come on, but it’s not natural and it’s not easy for people to go and to bare their emotional soul to other people,” said gosselin.
these groups can also help people discover other lesser-known forms of therapy that can be beneficial for well-being during and after cancer treatment.
“when you’re on a teal tea, you hear of all these great things. somebody did music therapy and somebody did art therapy,” said gosselin.
she notes that programs like teal tea and those through other organizations can also help people find what works for them, whether it’s exercise, social interaction, or finding time for themselves out in nature, which is a “huge act of self-care” during a cancer journey.
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giving yourself grace
dealing with an ovarian cancer diagnosis can be both physically and emotionally draining. gosselin wants people to know that finding the right care and resources and building a care team is all good and well when navigating the system, but so is being able to give yourself grace to be where you are while setting actionable goals to get where you want to be.
“after chemo, people might be like, i can’t even get off my couch. but maybe, your goal or your success for the day is you got up and you walked around your house one time, and that’s okay,” she said. “you’re going through this hard, challenging thing in your life.”
going easy on yourself when you can’t do everything that you want to do also comes with being able to reach out to others for help and learn to accept it when it’s offered, whether they be friends or family members, or anyone else in your circle.
“if somebody asks what they can do for you, maybe you need a meal, or maybe you need them to come and fold your laundry. be explicit with them,” said gosselin.
that goes both ways, as well, for people who want to be there for their loved one but don’t know how.
“as somebody who is offering help, offer something specific instead of (saying) call me if you need me because i guarantee they’re not going to call you,” said gosselin. “if you’re specific, then they’ll take you up on it.”
at the end of the day, navigating the system with ovarian cancer is difficult, but it can be made easier when you know what to do, what you need, and how to ask for it.
“you are the most important person in this journey. you have a voice and your voice is important and needs to be heard and deserves to be heard,” gosselin said.
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