diagnosed with brain cancer: how to find the right care and supports
“hearing those words, 'you have brain cancer,' can feel very overwhelming and shocking, so it can feel difficult to know where to start because your thoughts are being hijacked by fear"
8 minute read
the first step after being diagnosed with brain cancer is understanding the diagnosis, which can be achieved through working with a care team.
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being diagnosed with brain cancer can be an overwhelming experience, filled with a whirlwind of emotions, questions and confusion. upon hearing the news, people may find it challenging to figure out their next course of action regarding finding the proper care, resources or simply coping with their new reality.
learning about brain cancer
the best way to start your journey with brain cancer is by arming yourself with everything you can know about what it is, how it will affect you and what types of treatments are available.
understanding all of these aspects will arm you with the knowledge to ask the right questions when working with your care team, as well as help you develop certain expectations around treatment in terms of prognosis.
“hearing those words, ‘you have brain cancer’, can feel very overwhelming and shocking, so it can feel difficult to know where to start because your thoughts are being hijacked by fear,” said cheryl kanter, a social worker at the university health network (uhn) princess margaret brain tumour centre. “i would say that it’s important to understand the diagnosis.”
your healthcare team is an excellent resource for information, as they will be able to provide you with more tailored information.
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kanter notes that many people may be inclined to search the web, but it’s important to be cautious.
“i would caution people about jumping to conclusions, so it’s always a good idea to either print off whatever they’ve read online and to bring that to their oncology team to double-check that the information they’re reading is accurate and actually applicable to their own cancer diagnosis,” she said.
getting proper care for brain cancer
once diagnosed with a brain tumour, you will be connected to a team of different healthcare providers, each with their own role to play in your care journey. they will conduct tests, determine if surgery is needed and then decide what follow-up treatments are available.
at this time, it’s easy to become overwhelmed, especially because things “move along very fast” with a brain tumour.
“in my experience, the neurosurgical team would often make the referral pretty quickly to the oncology centre,” said kanter. “at that point, the patients and families have an opportunity to meet with the multi-disciplinary team, which could include the medical oncologist, so the person who has expertise in chemotherapy treatment, or the radiation oncologist, who is the specialist overseeing radiation.”
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kanter notes that patients may also be connected with other health specialists to address other aspects of care, such as a psychosocial team for the emotional and mental impact a brain cancer diagnosis can have on a person.
you will work with a care team to decide what treatment is right for you based on the side effects, effectiveness and the changes your body and mind may go through during this part of treatment.
in some cases, newer brain cancer medications that are available through clinical trials may be an option, depending on the type of brain cancer you have. it’s essential to research any trials available and speak to your healthcare team about some they may know about that are not yet publicly available.
the special access program with health canada is a program geared toward helping patients gain access to drugs that are not yet available in canada, so asking your healthcare providers about whether or not that could help you in your treatment is another way to go when it comes to finding the right therapy for you.
for appointments with your care team, kanter notes that having someone there to support you is also a helpful way to navigate a new normal.
“those visits can be very heavy in terms (of) the information received and just the motions are high, so if there could be an extra set of ears and eyes, that’s super helpful,” she said.
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when it comes to working with a care team, it can also be helpful to choose one person who’s connected to everybody to be your “quarterback” so you can maintain open dialogue surrounding your care without being overwhelmed by having to talk to many different people.
connecting with a social worker or patient navigator for practical care
being diagnosed with a brain tumour involves various medical approaches, but other forms of care will be required for you to attend and pay for treatments, as well as connect you with other supports for the emotional and coping aspects of living with brain cancer.
it’s essential that while working with a social worker or a patient navigator, you speak openly about your current situation and what you need. for example, if a cost is associated with your treatment, a social worker can help you explore ways to offset those costs or introduce you to support programs that can assist with financial needs.
“what people may not realize is that cancer can be associated with significant financial burden,” said kanter. “ohip is a wonderful thing, and while it covers most hospital care, we know that some cancer medications and some of those that are prescribed to brain tumour patients are not covered, and so we are leaning on programs like the trillium drug program to help.”
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she also notes that patient navigators and social workers can help in other areas, too, such as overcoming transportation barriers and finding support while they have to take leave from their employment.
if you live a considerable distance from your treatment centre, a social worker may also direct you to options for on-site lodging that can offset both the stress and the financial toll of travelling to treatments.
while connecting with a social worker, you can also plan and organize for yourself by creating a digital system or physical system to keep track of appointments, results, treatment plans, and resources you wish to reach out to.
reaching out for support and coping
aside from the practical stressors that can arise during brain cancer treatment, there are also emotional aspects of the disease that you can find support to deal with. uncertainty of what will happen to them, the fear of having a potentially terminal disease, and the changes that they will go through because of it can all weigh heavy on someone’s shoulders after being diagnosed with brain cancer.
“we know that a diagnosis of brain cancer can result in significant distress and can impact one’s ability to live meaningfully as they face such an unpredictable illness,” said kanter. “they may anticipate physical and cognitive decline and the threat of deterioration and dependency on others. we know that patients experience a range of emotions and that all of these feelings are normal and everyone’s different, and these feelings can change over time.”
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reaching out to a psychosocial team that can include social workers, psychologists, and psychiatrists can help people cope with the mental side.
“i would say psychosocial care is important, and that’s easily arranged,” said kanter. “if a doctor or someone on the team notices that somebody is feeling distressed, understandably, they can consult with a social worker or a psychologist or a psychiatrist. also, patients are able to self-refer as well.”
cancer support programs are a great place to start, as they can help connect you with individuals who are living with the same cancer, which can fight the isolation that often comes with this type of diagnosis.
it’s also important to lean on family and friends during this time, as they can help you feel supported and cared for. support groups are also a resource that’s available, but only if a person feels that they will benefit.
“some people really benefit from connecting with other people who have gone through a similar experience, and that could be delivered in a support group that’s either professionally led or peer-led, and there are lots of organizations that offer that type of program,” said kanter. “other patients find that frightening to be in a room with other people, and so we really just need to respect where people are at and explore, and if that doesn’t quite fit, then offer alternative resources.”
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according to kanter, support groups aren’t just there for emotional assistance. they can also help with income supports, relaxation, exercise, parenting groups, and more.
“there is a very broad menu of options in some of these community supports that we really appreciate and rely on,” she said.
for those who would like to get involved in support groups, there are many available through various organizations and hospitals. some possible options for cancer support include:
these organizations offer various resources for you to tap into, from information regarding brain cancer to support groups for yourself, family members, and more.
along with reaching out to others for support, taking other actionable steps to manage the emotional distress that can arise after a brain cancer diagnosis can provide positive benefits.
“keeping active is very good for psychological well-being. we also encourage people to look to meditation and relaxation,” said kanter. “we’re also very fortunate to have music therapy, so getting creative and being open to that creative side and the healing components of music.”
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caregivers also experience mental anguish after a loved one is diagnosed with brain cancer, so it’s essential for them to reach out for support, too, if needed.
“loved ones are often reporting that they just don’t feel prepared to deal with all of the responsibilities, and so we have a caregiver clinic at the hospital that has been set up as a resource for loved ones of patients impacted by a brain tumour diagnosis,” said kanter.
understanding palliative care
in some cases, a brain cancer diagnosis will be deemed terminal and require palliative care. palliative care focuses on improving your quality of life as best as possible through addressing physical symptoms as well as emotional concerns.
a palliative care team aims to improve your quality of life by providing strategies to cope with feelings of sadness, depression, helplessness, or grief while giving medical interventions, such as drugs and other strategies, to help manage the physical symptoms that may arise due to the tumour or treatment. they also provide support to loved ones.
advance care planning may also be a part of navigating the system if you’re living with a terminal brain tumour, and that requires planning for end-of-life care.
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there are various forms of palliative care. you can receive at-home care or live within a palliative care unit in a hospital. your oncology team will assist you in finding the right path for you if you require palliative care treatment, so it’s important to advocate for yourself and your needs.
the best thing you can do while navigating the system with brain cancer is ensuring the lines of communication are always open between yourself and your care team, as well as advocating for yourself in terms of care and treatment. it is your body, and you can ask for what you want or deny certain treatments if you don’t feel they are right for you.
prioritizing your well-being and focusing on support and quality of life is also vital while you go through brain cancer treatment, and this can be done by accessing support groups or resources and finding a care team that truly listens.
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