diagnosed with colorectal cancer: managing treatment, support and barriers
a colorectal cancer diagnosis can be a shock to the system, and knowing what to do after receiving one can make all the difference in your recovery.
9 minute read
there is no one-size-fits-all approach to cancer care because everybody is different. because of that, the course, progression, and outcome of each person’s colorectal cancer diagnosis will be unique as well.
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colorectal cancer is a common malady in canada. approximately 66 canadians are diagnosed with the disease each day. when that happens, they are often left to their own devices to figure out where to go next, who to speak with when creating a healthcare team, and what treatments are available.
the overwhelming experience is challenging to handle even on the best of days, especially since people diagnosed with colorectal cancer are often in the advanced stages of the disease and, thus, more at risk for poor outcomes. roughly 49 per cent of people with colorectal cancer won’t receive a diagnosis until their cancer has spread and reached stages 3 or 4, with around 21 per cent of people getting diagnosed at stage 2.
screening measures can help lower the number of later-stage diagnoses for those who develop colorectal cancer, but once the cancer has developed, best screening practices become a moot point.
“getting screened by 50 is a simple way to avoid the whole thing in the first place,” says barry d. stein, ceo of colorectal cancer canada and colorectal cancer survivor. “more than half of people diagnosed it’s already at the advanced disease stages, so they have to work fast.”
because colorectal cancer can be deadly when left to its own devices, knowing exactly what to do, where to go, and how to go about navigating the system after being diagnosed is crucial to overall rates of survival. with advancements in medicine, the outlook is better than ever, but as stein said, it’s a race against time for many diagnosed.
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here’s how you can manage a colorectal cancer diagnosis.
rely on your healthcare team
when diagnosed with colorectal cancer, there will be a collective group of healthcare professionals working on the case to ensure each patient is well taken care of from all angles. it’s difficult for new patients to establish this team without first knowing who they should speak with. the initial step starts with your primary physician or the person who diagnosed you.
“they should start with their physician and try to really understand (their cancer diagnosis),” stein said. “you should be working together with your healthcare professionals to obtain the best care, and it’s not always easy. my oncologist was kind of like my quarterback.”
while the oncologist was the star of stein’s show, other medical professionals also provide supportive care that can help you understand your diagnosis, treatments, and other factors that play into overcoming a cancer diagnosis. you will likely work with:
- a surgeon specializing in bowel cancers
- a nurse specialist who provides information, support, and other health services
- a radiologist who helps to perform and interpret scan results
- a pathologist who can determine the type of cancer and provide you with the information needed to understand staging and cancer types
- a stoma care nurse who will provide information and support about stoma care if you require one during your treatment
- a gastroenterologist specializing in diseases and disorders of the bowel
- a dietician to help you establish the best eating habits during treatment
- a psychologist or counsellor to speak with when coping with the mental side of a cancer diagnosis
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these healthcare specialists all bring a unique perspective and skill to your cancer care team, each of equal but different importance. they are there to provide you with everything you need to know, but seeking out the care you deserve is essential because they won’t come to you. it’s also important to bring a loved one with you during these meetings so that you have an extra set of ears for when your questions are answered.
“meet with your healthcare professionals and ask a lot of questions,” said stein. “try to really understand and take some time with someone by your side because sometimes you don’t hear anything about what your physician is saying to you.”
by creating a solid support of medical staff around your care and having someone there to listen when you can’t, you build a safe space for yourself to utilize when navigating the system.
personalize healthcare to work for you
there is no one-size-fits-all approach to cancer care because everybody is different. because of that, the course, progression, and outcome of each person’s cancer diagnosis will be unique as well. that’s why getting to know your body, your genetic makeup and cancer cell genes is vital.
“you have to be informed about your own body, know yourself, and your family history—genetic, hereditary-wise,” stein said. “for example, a small subset of colon cancer patients may have immunotherapy if they are msi high. for others, they will get the standard of care. but if they have a specific mutation, that may influence the type of drug they get to match.”
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because of how individualized colorectal cancers can be based on a person’s genetic and hereditary makeup, it’s vital to know that prior to engaging in any treatments.
“we would like to have somatic testing done, even if there isn’t a drug that matches the mutation to lay the groundwork for,” stein said.
biomarkers are another aspect of care that is useful to know when navigating the system following a diagnosis. these specific markers are biological molecules that can act as signs indicating normal or abnormal processes within the body or indicate the presence of certain diseases, such as colorectal cancer.
when asked what people should know about their bodies when caring for themselves following a colorectal cancer diagnosis, stein said that biomarkers are crucial pieces in the puzzle because “treatments may change by knowing your biomarkers or molecular profile.”
several biomarkers can help determine the proper route of treatment for people with colorectal cancer, including:
- kras: a gene that plays a role in the growth of colorectal cancer cells. a person with this gene mutation is less likely to respond well to egfr inhibitors, a class of targeted therapy drugs.
- kras wild-type: the unchanged form of the kras gene that responds well to egfr inhibitors.
- nras: a gene that regulates cell division but also doesn’t respond well to egfr inhibitors.
- nras wild-type: the unchanged form of nras that responds well to egfr inhibitors.
- braf v600e: mutation of the braf gene, which plays a role in cell division. people with this mutation are less likely to respond well to egfr inhibitors unless used alongside braf-inhibitor encorafenib.
- braf non-v600e: non-v600e mutations are uncommon but can occur in colorectal cancer patients. people with these gene changes are less likely to respond well to egfr inhibitors and standard chemotherapy.
- pik3ca: this gene plays a role in cell division and growth, and mutations are associated with a lower efficacy of egfr inhibitors.
- msi-h/dmmr: a status given to people with genes that repair other genes improperly, leading to mismatched repaired genes being unable to perform their tasks within the body. having this status is associated with a higher risk of developing cancer. patients with this will benefit from immunotherapy.
- cea: a protein found in colorectal cancer cells that can be used to determine if a specific cancer treatment is working as it should or if there is a cancer recurrence.
- her2: a gene that helps with cell division and decreases the likelihood of someone responding positively to egfr inhibitors.
- trk fusions: a fusion of two unrelated genes that can cause tumours to grow within the body. although rare, it can be treated effectively using drugs that target ntrk-fusion cancers.
- ctdna: small pieces of dna in the bloodstream that start within tumour cells that can be used to detect and diagnose tumours, guide personalized treatment, monitor treatment, and monitor cancer recurrence.
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the myriad of different biomarkers are essentially your personal health guide to what treatments will work best for you. while looking toward the future after being diagnosed with colorectal cancer, you can use these to formulate a more effective plan of action with your healthcare team.
overcome barriers to care
while there are systems in place to ensure that cancer patients receive the best care possible, there are barriers that can be hard to navigate as a new patient. these barriers all revolve around access to different things that are required while undergoing cancer treatment.
the first is timely care. it’s not always easy to get to see a specialist after being diagnosed with colorectal cancer, and the back-and-forth that many people have to endure can be challenging.
“the time from the physician to the gastro, from the gastro to the surgeon—that big gap in time is a big barrier between seeing your family physician and getting diagnosed and treated. that could be a year or more,” stein said. “your disease goes on in that period of time. [there are] big delays in canada. generally, when you’re finally in the system, things work pretty well, but it’s accessing that.”
as stein said, things move a lot faster once you’re in the system. but there are still other roadblocks to contend with once you’ve started your journey through a cancer diagnosis, such as access to the latest medical advancements.
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“another big barrier is access to clinical trials. you may be in one province, and the trial is too far away, so it’s not accessible to you,” said stein. “clinical trials are the one way we get access to newer technologies, newer drugs in canada. once they’re out there, this is a very important way for cancer patients to get treatment.”
during cancer treatment, people must go through various avenues of care, including medications and possible surgeries. however, other aspects of health, such as diet and lifestyle and psychosocial assistance, could be beneficial but are not as easy to access.
“we don’t have timely access to nutritionists or dieticians. the delays—these are all barriers,” stein said. “that’s not to say that you can’t get timely and excellent treatment in canada. it’s just that we want it equitably accessible across the country, and those are some of the issues.”
“access to psychosocial healthcare and trying to find a psychologist to help you through this—big cancer centers often have these opportunities, but community centers, not so much,” said stein.
live life as normally as possible
during cancer treatment, it can be hard to keep up with the same routines and lifestyle you lived prior to your diagnosis. after all, hearing those words can change the entire trajectory of your life. but, according to stein, living life as normally as possible is an essential aspect of navigating the healthcare system in a way that truly benefits you and your journey with colorectal cancer.
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“keep a positive attitude for yourself, but for all those around you. it makes everything easier and encourages you to adhere to treatment,” said stein. “have a positive outlook on the opportunities to continue your life in a normal fashion and enjoy things. don’t forget about everything else.”
it may be difficult to keep living like you would before being diagnosed with cancer, but allowing yourself to take a break from your diagnosis every once in a while is a great way to keep your spirits up while you cope with the changes, treatment, and barriers to care.
find support during your colorectal cancer journey
support groups and loved ones can play a critical role in your cancer care journey. they can help you navigate your treatment in a more informed and connected way.
“as you go through this treatment, there are many different things that can happen depending on the disease. you have to understand these treatments and side effects and how to deal with them,” stein said. “hook up with a support group or a buddy that has gone through this that could be for yourself and your caregiver.”
stein also emphasizes the importance of knowing yourself, what’s important to you, and how to go about the changes you’ll experience in the most beneficial way possible.
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“you have to evaluate what’s best for you and your family. some people, for example, value quality of life over length of survival. sometimes you want to increase your survival and take a dip in quality of life. other people will say, ‘i don’t mind living six months less with a better quality of life.’ know what you want.” he continues, “don’t be afraid to change. i think that’s the most important. be flexible. things change, your attitudes change, treatments change—nothing is constant.”
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