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diagnosed with endometrial cancer: managing stages, treatments and resources
9 minute read
people diagnosed with endometrial cancer have an increased risk of developing a mental health disorder in the first one to two years after their diagnosis.
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endometrial cancer is the most diagnosed gynecological cancer in canada, as well as the second most fatal. it accounts for roughly 95 per cent of all uterine cancers, and develops in the endometrium, the inner lining of the uterus.
according to the canadian cancer society, roughly 8,600 canadians will develop endometrial cancer in 2024, and rates of the cancer continue to rise. even so, the awareness level surrounding endometrial cancer is incredibly low when looking at how many people it affects, as well as how dangerous it can be to delay treatment.
when diagnosed with endometrial cancer, due to a lack of knowledge and awareness surrounding the disease on all levels—healthcare providers and patients—it can be challenging to know where to start when establishing a therapy pathway that will help improve the overall prognosis.
dr. sarah ferguson, a gynecologic oncologist with the princess margaret cancer centre, professor and vice chair of research in the department of obstetrics and gynecology at the university of toronto, and associate scientist at the lunenfeld-tanenbaum research institute, sees patients with endometrial cancer often in her practice and knows that awareness of the disease is nowhere near where it needs to be.
“it has been an under-recognized problem in individuals with a uterus, and if you look at the canadian cancer statistics, it’s been one of the only rising cancers in incidence rates and mortality over the last 10 to 30 years,” she said, later continuing, “there’s very little publicity.”
dr. ferguson notes that once a person is in the system, the treatment pathway is pretty straightforward. still, it’s vital to become better acquainted with the signs of the disease before being diagnosed because, like all cancers, the earlier a person receives a diagnosis, the better the outcome will be.
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that said, being diagnosed with cancer can be a scary and overwhelming time in a person’s life, so even with clear pathways, knowing what steps to take can make a significant difference in coping with the disease and ensuing treatment.
recognizing the signs and risks of endometrial cancer
in order to diagnose endometrial cancer early, patients and physicians must be aware of the signs of this disease. this is a vital aspect of endometrial cancer diagnosis because, as mentioned above, getting treated early is the best way to avoid a worst-case scenario.
dr. ferguson notes that any bleeding after menopause is not typical and thus should be addressed because older age is one of the most significant risk factors when looking at endometrial cancer, and bleeding is the most prevalent sign of the disease.
“probably 90 per cent or more will have symptoms of vaginal bleeding. it may just be spotting, and it might be very little,” she said. “i think the most important thing is for individuals to realize that any bleeding is not normal in menopause at all. we’re so used to having bleeding throughout our life that a little bit of spotting is not that alarming, so just to recognize that even though it’s not a lot, it’s still not normal.”
it’s a little more challenging for those who are still in their childbearing years because abnormal bleeding can be common due to a host of different issues, most of which are benign but sometimes can be a sign of endometrial cancer.
“in pre-menopausal people, people don’t think of endometrial cancer because it’s always been thought of as a post-menopausal disease, but it is rising in the younger population,” she said.
she goes on to say that any abnormal vaginal bleeding, even in young people, shouldn’t be ignored, even if endometrial cancer isn’t likely the cause. those with uteruses should pay close attention to abnormal vaginal bleeding, heavy bleeding, consistently missed periods, or bleeding between periods and see their healthcare provider if it occurs.
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there are other signs of endometrial cancer, but they are non-specific, so it brings up the old adage that it is better to be safe than sorry when experiencing these symptoms and seeing a healthcare provider for them.
there are also several risk factors associated with endometrial cancer, all of which should be taken into account when experiencing any symptoms.
“people who have anovulatory cycles, a diagnosis of polycystic ovary syndrome (pcos), diabetes or metabolic syndrome or have a high bmi greater than 28 are at an increased risk of having endometrial cancer at a younger age,” she said.
other risk factors can include:
- experiencing late menopause
- never having carried a child
- the use of unopposed estrogen
- lynch syndrome
while only 10 per cent of endometrial cancer diagnoses occur in people under the age of 50, acknowledging the risk factors and knowing the signs of disease can make navigating the system after diagnosis that much easier.
understanding the type and stage of endometrial cancer
after a person is diagnosed with endometrial cancer, they will be put on the pathway to treatment, which depends on various factors, including the stage of their disease as well as the subgroup of endometrial cancer they have. there are high-risk and low-risk patients, both of which will follow a different path toward therapy.
the way care is provided will differ from province to province, but generally speaking, once a person reaches a diagnosis, the process of care is typically done in an efficient fashion.
“we have recognized gynecologic oncology cancer centres (in ontario), and depending on the type of endometrial cancer, especially if it’s high grade or any molecular subgroup of endometrial cancer that we consider high risk, they’re prioritized to be seen in the gynecologic oncology centre, which there are many across ontario,” dr. ferguson said. “we have specific wait times from referral to consultation for people who are potentially surgical candidates that we must adhere to and prioritize.”
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dr. ferguson goes on to say that there are different priorities given to each person diagnosed with endometrial cancer, ranging from priority one to four. priority one is the most severe, and the levels decrease as the priority level increases.
““most (cases) are priority three in ontario, which is within 28 days from seeing a patient or deciding someone needs surgery,” she said.
dr. ferguson notes that most provinces are also continually improving their access to care for those with endometrial cancer. once a person is in the cancer system, there is a level of timeliness that allows people to receive the best care as quickly as possible.
understanding endometrial cancer treatments
there are various treatments available to people diagnosed with endometrial cancer, and there have been many advancements in surgical and systemic cancer treatment in recent years.
before, treatment was very “blanketed” in the sense that very few options were available to people with a diagnosis. still, with new drugs on the horizon, it’s easier for people to experience a more personalized approach.
surgery is the primary option for people with early-stage disease, with chemotherapy being added to those with advanced disease. in some cases, radiation therapy, hormonal agents, or targeted therapies are being used as they become available.
“over the last few years, we’ve had our first drugs that have been approved specifically for endometrial cancer,” said dr. ferguson. “we expect over the next couple of years a lot more options for those patients who have, unfortunately, advanced disease or recurrent endometrial cancer, which is almost universally fatal. before, we had very little to offer them.”
with the continuous addition of new drugs and therapy methods for endometrial cancer, it’s crucial for people who have been diagnosed to do their due diligence in researching what’s out there and working with their care team to land on the therapy that would work best for them and give them the most optimal prognosis.
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the goal of new treatments is not only to provide more options but also to offer other therapy pathways for those who may not be able to respond to current interventions.
“we’re becoming much more sophisticated,” dr. ferguson said.
the treatment pathway also determines whether a person is introduced into the cancer system or treated by their gynecologist. for higher-grade, faster-growing, or more aggressive types, a person will likely be put into the cancer system and work with specialists, including gynecologic oncologists or radiation oncologists.
that said, at the earlier stages, a person may not have to enter the cancer system at all, and it can be treated through their gynecologist. they will perform the surgery because, in those cases, surgery is all that’s needed. the severity of a person’s cancer will be the deciding factor in which path a person takes after being diagnosed.
coping with an endometrial cancer diagnosis
people diagnosed with endometrial cancer have an increased risk of developing a mental health disorder in the first one to two years after their diagnosis. because of that, coping with the emotional and mental challenges of having endometrial cancer is a significant aspect of going through treatment.
“having a cancer diagnosis, for many people, is the first time they’ve had any real medical illness, and it’s earth-shattering,” said dr. ferguson, later continuing, “many people have changes in their body, changes in their stamina, feeling body betrayal, all these things that can happen after a cancer diagnosis.”
becoming knowledgeable in everything you’re going through can also be a great help, but in some cases, knowing certain aspects of endometrial cancer can be helpful in some ways but detrimental in others. for example, statistics about mortality rates can bring about a lot of negative feelings if they aren’t as positive as one hopes.
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dr. ferguson understands the importance of transparency with patients but always reiterates that just because a statistic is available doesn’t mean it will apply to them.
dealing with a cancer diagnosis is not easy, regardless of where a person falls in the statistical sense, so it’s vital to be prepared for the emotional turmoil that can occur. however, dr. ferguson notes, “people are much more resilient than we think.”
the resources available in the mental health and cancer space can drastically reduce a person’s negative feelings toward their experience, helping them to cope better with the cancer diagnosis, as well as everything it entails.
“we have a really good psycho-oncology program where i work,” dr. ferguson said. “many cancer centres have people and their support groups and whatnot to help these patients.”
getting involved in support groups and seeing a therapist who specializes in mental health and cancer care can also be a great help in coping as they are well-equipped and knowledgeable in the specific topics and struggles that people going through cancer treatment are dealing with.
finding endometrial cancer resources
since the awareness surrounding endometrial cancer is not high-level, the resources for those recently diagnosed are a bit more challenging to find. that said, they are available—a person just needs to know where to look.
there are no organizations or advocacy groups dedicated specifically to endometrial cancer, but cancer centres that treat this form do have specialized healthcare providers and programs that can help people find information, connect to support groups, and find other resources that can help them on their cancer journey, such as “support groups like wellspring, or at certain cancer centres, just joining cancer support groups in general,” said dr. ferguson.
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some possible options for people diagnosed with endometrial cancer include:
provincial cancer centres, such as cancer care ontario and bc cancer, can also be great resources for recently diagnosed patients.
being diagnosed with endometrial cancer is not something everyone has to go through, but thousands of canadians will be each year. because of that, it’s essential to learn about personal risk factors and recognize the signs so that you can seek diagnosis and treatment early if you do develop it.
once diagnosed, dr. ferguson notes that “once you’re in (the cancer system), it’s such great quality (healthcare),” so understanding the limitations surrounding awareness is of the utmost importance.
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