Our Patient Stories
Christine’s Story
Christine McKay, a 67-year-old retired mental health and addiction therapist, has been reflecting on her 12-year journey with lobular breast cancer. Living semi-rurally with her partner and dog, she dedicates much of her time to lobular breast cancer research and advocacy, balancing it with her love of travel, gardening, and reading.
At 56, Christine’s cancer journey began not with a palpable lump, as is often the case, but with subtle changes: nipple retraction and peau d’orange skin. Recognizing these as potential warning signs, she promptly consulted her family doctor. The diagnosis process was efficient. Within two weeks, and after emphasizing the urgency to the Breast Health Clinic in Ottawa, she received her diagnosis, stage 3C, advanced breast cancer.
Christine feels fortunate to have received her diagnosis 12 years ago, noting that care at the time was streamlined and efficient. She’s aware of the current challenges faced by others, particularly in British Columbia, where limited radiation capacity can lead to patients being sent to the US for treatment. Her semi-rural location necessitated travel for some of her care—82 kilometers round trip to the cancer center and 140 kilometers round trip for radiation therapy.
Christine’s cancer experience transformed her into a passionate patient advocate. She founded a Facebook group for Canadians with lobular breast cancer and actively participates in research advocacy for various funding projects. She has witnessed the evolving landscape of cancer care, observing both improvements and concerning care gaps, particularly for those in rural areas.
Her experience caring for her sister with cancer showed Christine the glaring care gaps that exist in Canada’s cancer care system, particularly the significant financial burden that comes with a cancer diagnosis.
When her sister was diagnosed with a rare liver cancer, Christine took a leave from work to care for her, a leave that ultimately became permanent. She saw first-hand the lack of flexible, part-time options and the absence of long-term disability support, which would have allowed her to continue working while providing care. Her sister also took on significant financial stress, spending $1,500 out-of-pocket annually for medications.
The stringent requirements of the federal Disability Tax Credit also presented challenges for Christine and her sister, leaving them and many other patients without crucial financial support.
Recalling her sister’s rapid decline and death just nine months after her diagnosis, Christine wants to continue raising awareness for rare cancers like bile duct cancer.
Above all, Christine is calling for action at all levels of government to address the financial burden of a cancer diagnosis on people in Canada living with cancer.
The provincial government in B.C. should invest in improving equitable access to treatments under the provincial drug program so patients do not have to pay thousands of dollars in out-of-pocket costs and the federal government must look at the stringent requirements of the federal Disability Tax Credit to address the barriers it presents for people in Canada living with cancer.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
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Katie’s Story
Katie Hulan, a resident of Victoria, British Columbia, was diagnosed in 2021 at the age of 33 with stage 4 lung cancer and told she would have a few months to live. Katie loves the outdoors and adventure. As a healthy young woman, this was a complete shock to her. Prior to this diagnosis Katie had been feeling good about her health, so this news was not only surprising to her but to her partner, friends and family as well.
Six months leading up to her diagnosis, Katie had developed a cough that was getting progressively worse week by week, and throughout the course of those six months, she worked with her family doctor to try to come up with some sort of diagnosis.
Over the course of two months, Katie’s doctor prescribed her multiple different puffers, but nothing seemed to work. She was seen by respirologists, and eventually a CT scan and blood work confirmed that she had a mass in her lung.
Over the course of the next few days as Katie grappled with this life changing diagnosis, she learned that the cancer had also travelled to her brain and liver and was told that she only had a few months to live. Katie was determined to figure out what the next steps were for her and her family. She was certain there was something that could be done that would Improve her prognosis.
Katie feels she should have been diagnosed sooner. It is unacceptable that she had to wait six months before she received her diagnosis.
After months of self-advocacy, Katie was able to access genome-based testing. This was a turning point as the genome-based testing revealed that Katie was eligible for a targeted therapy that could significantly improve her outcomes. She was prescribed the targeted therapy and as she continued this course of treatment, her cancer stopped spreading and her outcomes significantly improved.
Katie’s diagnosis truly impacted her life. It was worrisome and scary from day one. She was only given a few months and didn’t know what her quality of life would be.
Given her experience navigating the cancer care system in Ontario and British Columbia, Katie is a passionate advocate, calling on elected officials to act urgently to address the long wait times from testing to diagnosis. It is unacceptable that people in Canada living with cancer are waiting far too long to get the care they need. Elected officials need to prioritize investments to address wait times so Canadians are no longer dying to be a priority.
Katie is also calling on policy makers to ensure that our health system is equipped to adopt genome-based testing. Being able to access genome-based testing was a turning point in Katie’s journey and so many people in Canada living with cancer are facing barriers in accessing innovative care and treatment.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.
Lindsay’s Story
Forty-year-old Lindsay Gustafson, a grade 1 and 2 teacher from Winnipeg, was diagnosed with breast cancer at the age of 38. During a camping trip to Kenora, she noticed a lump near her breast. Once she returned home, Lindsay was unable to get an appointment with her family doctor. She had nowhere else to turn and eventually had to go in to see a doctor at a walk-in clinic who recognized the potential seriousness of her condition and ordered a biopsy.
On October 26, 2022, Lindsay received a diagnosis: stage 2 triple-negative breast cancer.
After fourteen months of treatment including 16 rounds of chemotherapy and a lumpectomy and lymph node removal, 99% of the cancer was successfully eliminated. Just as life seemed to be returning to normal, a routine follow-up scan in January 2024 revealed a small lung nodule, too small for a biopsy. A “wait and see” approach was suggested by her doctors.
By April 2024, the nodule had doubled in size, confirming Lindsay’s breast cancer had metastasized to her lungs, progressing to stage 4.
The next two months, Lindsay underwent a number of scans, tests, and consultations with surgeons and radiologists. A lung biopsy revealed a single tumor, making her eligible for surgery. However, due to long wait times, the surgery date wasn’t scheduled until September, then pushed back to late September, and finally to October. By then, five months had passed since her last CT scan, necessitating a new one.
Two days before her 40th birthday, she found out that her lung tumor had doubled in size, and 25 new nodules had appeared. In just five months, the cancer had gone from one lung nodule to 26. Surgery was cancelled, as was radiation, leaving chemotherapy as the only option.
The wait times Lindsay experienced were unacceptable. A stretched health care system fraught with delays and wait times has left so many Canadians living with cancer waiting months to get the care and treatment they need.
Frustrated by the delays, Lindsay spent considerable dollars out-of-pocket between July and September, consulting a naturopathic doctor and undergoing alternative therapies in a desperate attempt to control her diagnosis. Even simple tasks like parking at the hospital became a financial burden, with limited and expensive options forcing her to rely on services like Wheels of Hope.
Our cancer system is failing people in Canada. They are waiting far too long to get the care they need. Policy makers need to address these gaps, make investments in the system to ensure Canadians can rely on faster, better access to cancer care.
Going through this journey, Lindsay continues to raise awareness, actively seeking information and support through online groups, advocating for access to financial grants and resources, and participating in research studies.
She serves on a review panel for cancer research grants and is a patient advocate for various organizations, including the Terry Fox Foundation and the Pan-Canadian Palliative Care Research Network.
Lindsay’s message to elected officials is clear: address the wait times in our cancer system. Canadians living with cancer should not be waiting months to get the life-saving care and treatments they need. Elected officials need to prioritize this. Canadians living with cancer should not dying to be a priority.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.
Tired of fighting for equal care in Canada: Brent’s ongoing battle with cancer
Brent Joel, a resident of North Burnaby in Metro Vancouver, was first diagnosed with non-Hodgkin’s lymphoma and Myelodysplastic syndrome (MDS) in November of 2022, at the age of 65. Prior to his cancer diagnosis, Brent lived his life to the fullest and was looking to enjoy his life as a retired firefighter. After years of feeling tired and run down, Brent was shocked to receive his cancer diagnosis.
Brent’s doctors advised him to treat the non-Hodgkins lymphoma first, before addressing the MDS, as it was a less aggressive form of cancer. Brent went through multiple rounds of chemotherapy in February of 2023, which thankfully was successful and put his lymphoma into remission. Now Brent was waiting to see what the treatment plan would be for his MDS.
Brent’s medical team decided that to treat Brent’s MDS and his symptoms of exhaustion and anemia, he would be given weekly blood transfusions as well as being put on Decitabine/Cedazurdine.
This treatment left Brent even more tired than before with many side effects such as extremely high enzymes in his liver and a horrific cough. He was not able to function on a daily basis. Additionally, he and his wife Michele were driving all the way from Burnaby to Vancouver twice a week for his transfusions. His medical team chose to take him off of this treatment and at this time they felt it was too toxic for his system to handle.
There is something out there that could help Brent. The drug called Reblozyl. This is a treatment that is not currently covered in British Columbia but covered everywhere else in Canada. Due to this disparity, the treatment would cost Brent and Michele over $100,000 annually out of pocket. The advantage of Reblozyl is that it increases the red blood cells and hemoglobin in the blood, with the intent of reducing the anemia requiring fewer or no transfusions. Too many transfusions can cause iron overload in the liver.
Brent and Michele have dedicated their time to advocate for the right treatments to be available and accessible for people in British Columbia living with cancer who need them.
Brent’s message to elected officials – improve timely and equitable access to the treatments British Columbians need.
Brent and Michele’s message to others going through a similar journey is to take every day as it comes. There will be good days, and there will be lots of bad days. Michele has been a constant support for Brent throughout his treatment, and this experience has been hard on them and their three adult children and their families. Brent and Michele are hopeful that in the future, other families in B.C. will not have to fight as hard to have their loved ones taken care of.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.
Garry’s Journey
Garry is a 67-year-old retiree whose hobbies include music, kayaking, fishing, trail walking and wildlife photography. Garry found himself battling a frustrating and fragmented healthcare system following his prostate cancer diagnosis. What should have been a straightforward path from diagnosis to treatment, became a frustrating journey of long waits, extensive travel, and inadequate care.
Garry was first diagnosed in London, Ontario. It took several attempts and repeated blood tests that showed rising Prostate-Specific Antigen (PSA) levels. After lengthy and agonizing wait times, he was finally able to secure an appointment with a surgeon. The delays were further exacerbated by a planned move from Woodstock to Petawawa. The hospital, aware of his relocation, inexplicably scheduled crucial scans after his move date, forcing him into a cycle of lengthy trips back and forth which sometimes took up to 6 hours.
Following his move to Petawawa, Garry struggled to find a new family doctor, meaning that he had no choice but to remain reliant on his family doctor in London which made communication with the hospital where he lived more complicated.
Garry was officially diagnosed on August 12th
A referral to Pembroke hospital resulted in almost a two month wait for an initial consultation, where he learned his cancer was worsening. This initiated a new round of arduous travel between Pembroke and Ottawa, a two-hour journey each way. Early morning appointments often required overnight stays in hotels, adding financial burden to the already considerable emotional and physical strain caused by his diagnosis.
The following January, Garry finally received the surgery that he had been waiting for. He believes the prolonged delays significantly contributed to the aggressive growth of his cancer, necessitating more extensive surgery, including the removal of part of his bladder and some lymph nodes. The accumulated costs of travel, accommodation, and parking, combined with the emotional toll of navigating a fragmented and backlogged healthcare system, compounded the challenges of his cancer journey.
Garry underscores the critical need for improved communication and coordination within the healthcare system, urgent action to address wait times and backlogs and a recognition that timely access to quality care is not a privilege but a fundamental right.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.
Phil’s Journey – Living well with multiple myeloma
In 2019, at the age of 57, Phil – a retired pastor, teacher and avid runner started experiencing unusual fatigue and shortness of breath during his runs out in the great outdoors of British Columbia. Phil scheduled an appointment with his doctor immediately, where he discovered he was anemic and prescribed iron pills. However, a fractured rib during a routine run, led to further tests and a referral to a hematologist. The hematologist called Phil to tell him they would be able to see him the next day. He knew something must be serious, but Phil was not thinking about cancer at all. After a few more tests, including a bone marrow biopsy, Phil received his diagnosis: multiple myeloma.
When it came to Phil’s eventual stem cell transplant, he was surprised to learn there is only one place in the province that performs this treatment. Phil and his wife were fortunate to be able to make the journey from Whiterock into Downtown Vancouver. However, not all patients would be in a position to do so.
Phil’s message to British Columbia’s government in waiting – improve timely and equitable access to the treatments and therapies people in British Columbia living with cancer need.
Following his diagnosis, Phil underwent chemotherapy, a stem cell transplant, and has since remained stable through maintenance chemotherapy. Like many others living with cancer, Phil experienced a relapse. He will soon be starting a new line of therapy.
Phil’s journey has not been without challenges. During his remission, while on maintenance chemotherapy, his chemo medication was unilaterally changed to a generic version of the drug. This brought significant adjustment challenges. CAR-T cell therapy, a new and efficacious treatment for multiple myeloma is not yet approved across Canada, which would improve the lives of many people living with the disease.
Phil has been lucky to have the support of family and friends throughout this journey. When he was first diagnosed, a friend flew all the way from Colorado to be with him for some of his treatments. His wife has also been an immense support from day one. The support Phil has received has made a lasting impression on him. Having people show up for you can help you cope with the emotional and mental toll of living with cancer. This is why Phil got involved with advocacy as a patient advisor with Myeloma Canada.
Phil has compared cancer to running a marathon. It’s not easy, but it is conquerable. He continues to be a relentless advocate for improved access to care and treatment for people in British Columbia and across the country living with cancer.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.
A journey from health care provider, to patient, to cancer advocate
In 2023, Catherine, a retired nurse from Regina, became a patient herself as she was diagnosed with breast cancer. Catherine’s journey to diagnosis was one that happened over many years. In 2021, she noticed a lump in her breast and was told by her clinic it was benign. The following year at a checkup, she was reassured yet again that it was probably benign. In 2023, her lump had gotten larger, and she had additional symptoms like very intense hot flashes. Catherine went to her doctor and asked for a biopsy as she was concerned. Catherine’s doctor suggested they start with a mammogram and then if they felt it was required, they would order a biopsy.
Even with a lump that had significantly grown in size, Catherine was not seen for her mammogram for almost six weeks. From there, it was determined she would require a breast biopsy, which took another month. From the date of her doctor’s appointment until her surgery, Catherine waited five months while her lump continued to grow. Additionally, Catherine’s biopsy was being conducted in Calgary, so she had to organize travel and accommodations. Additionally, currently in Regina, there are only two surgeons conducting breast cancer surgeries.
Catherine was very fortunate to have her husband, family and friends by her side to support her while undergoing testing and surgery. Additionally, Facebook groups like “Breast Friends” provided Catherine with comfort and information from those also being treated for breast cancer. Unfortunately, Catherine’s brother was also diagnosed with cancer at the same time. For Catherine, this meant that they could lean on each during this difficult time, and it taught her that support can go both ways.
Catherine’s message to those who may have been recently diagnosed or undergoing treatment is to never stop advocating for yourself. Don’t be scared of potential repercussions. You are your own best advocate.
Catherine’s message to elected officials is to ensure there are trained nurses and doctors across the country. There are now only two breast cancer surgeons in Regina, when there used to be seven. We need to have doctors, nurses and a cancer care system that is there to support people when and where they need it. Elected officials need to invest in and commit to improving cancer care for all Canadians that are and, in the future, will be, impacted by cancer.
There are far too many similar stories as Canadians are waiting to be a priority. Cancer Action Now is working to bring forward challenges experienced by Canadians living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here.
Stay connected by following us on Twitter, Instagram and Facebook.
How Self-Advocacy can Save Your Life: Lorna’s Journey as a Cancer Patient and Advocate
Lorna McKinley has been living with Polycythemia vera (PV) blood cancer since 2012. As a former special education teacher, Lorna knows firsthand how important self-advocacy can be. Lorna has been lucky to receive excellent care, but now as a full-time advocate, she has learned just how lucky she has been compared to others across the country.
When Lorna was first diagnosed, she was sent to her local cancer center in Kitchener for treatment. For four years, she had very basic treatment until her platelet count went up in 2016. At this time, she learned about a myeloproliferative neoplasm (MPN) specialist in Hamilton and requested a referral from her hematologist. Lorna is lucky to live only a 45-minute drive from the MPN specialist, as there are not many across the country. On the West Coast, Vancouver has one and Calgary has two, in Ontario, Hamilton has two, London recently hired one, and Toronto has several. In Quebec, Montreal has three. For those living with PV outside of these regions, there is no access to a specialist outside the urban areas
Lorna’s cancer is currently being treated by a drug that would cost $60,000 out of pocket. Thanks to Cancer Care Ontario, Lorna’s costs are subsidized for the treatment. Again, in other provinces this is not the case.
Since retirement, Lorna has dedicated her free time to advocacy. In this world of online information, she recognizes there is a surplus of information available, but it can be hard to find good and reliable information. Through her support groups, Lorna’s goal is to equip PV patients with the information they need to self-advocate within their medical support teams. For PV patients, next generation sequencing is extremely important. This is where clinical trials and precision medicine play a key role. Lorna knows she has been extremely fortunate but has met others who have taken years to get diagnosed because of a lack of access to genomic testing and next generation sequencing.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.
Resilience in the Face of Recurrence: Judy Ross’ Fight Against Breast Cancer
Judy Ross, a 71-year-old resident of Nova Scotia, was first diagnosed with stage 3, grade 3 breast cancer in 2001 at the age of 40. Throughout her life, Judy maintained a very active lifestyle. From running six miles, three times a week, to eating a health diet, she never thought that she would receive the diagnosis that she did.
Access to care in Nova Scotia remains a significant challenge, particularly because in her community nearly half the population doesn’t have a family doctor. These problems were exacerbated by the COVID-19 pandemic. Judy missed two years of her regular mammograms during this time and when she finally went in for a check-up, she discovered that she had breast cancer again – the same stage and grade as before.
The diagnosis was devastating, and the subsequent wait for treatment, which lasted six months, was mentally exhausting. The financial burden of her treatment posed another challenge. A shot that cost $1,500 was just one of the many expenses she faced.
Despite these hurdles, Judy found strength in her support network of friends who had been through similar experiences. They provided a safe space for her to express her feelings and offered much-needed support and companionship.
Judy turned her pain into purpose by connecting with other patients. She became involved with the Cancer Society, attended numerous oncology meetings, and formed many friendships through a national program for people with similar diagnoses. Her experiences sparked a desire to help others navigate their own cancer journey.
Judy’s message to others going through a similar journey is one of hope and resilience. She encourages them to learn to love themselves, share their feelings, and use journaling as a means of self-reflection and processing emotions. She urges health-system decision-makers to reduce wait times and provide immediate help and support to those diagnosed with cancer, including improving access to primary care.
There are far too many similar stories as people in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.
Julie’s Journey: Navigating Cancer Diagnosis and Treatment Amidst Delays and Health System Gaps
In February of 2020, Julie, a resident of Ottawa, felt a lump in her breast while doing an at-home breast exam. Julie scheduled an appointment with her doctor immediately and was told the lump was probably nothing. It was at that moment, she felt she needed to become an advocate for her health. She urged her doctors to conduct further testing, and her doctors moved forward with an MRI. At the age of 47, and right before the pandemic lockdown, Julie was diagnosed with breast cancer.
When she received her diagnosis, the COVID-19 pandemic had just put a halt on the majority of healthcare services across the country. Julie’s doctor told her that treatment was being put on hold for the foreseeable future, and she would be put on a waiting list. After waiting for long enough, Julie chose to undergo a lumpectomy and mastectomy through a private clinic in Québec.
Additionally, in the fall of 2020, a nurse practitioner noticed a basal cell carcinoma during a routine check-up and Julie was diagnosed with skin cancer. She was told that it was extremely urgent to have the mass removed because it was one centimetre from her eye but that she wouldn’t be able to see a dermatologist for the surgery for another year. Once again, in order to save her life, Julie had to have her mass removed at a private clinic in Québec.
Julie’s experience with long wait times is not uncommon for people in Canada living with cancer. People in Canada living with cancer are waiting to be a priority. They should not have to wait on a waiting list for months and years to get the care they need.
Julie’s cancer diagnosis put pressure on her relationship with her husband, as he was her primary caregiver. Julie is a mom to three kids who stood by her side throughout, but the experience was very challenging for her family.
Julie’s message to people living in Canada newly diagnosed with cancer or going through treatment, is to be a relentless advocate for your health, when it comes to testing and treatments. If you don’t push, you will continue to be on a long wait list, leading to your cancer spreading or getting worse. You are your own best advocate. It is very unfortunate that when you at your most vulnerable, not feeling well and anxious about survival, the gaps in our health care system demand that you be the strongest.
Her message to Ontario’s elected officials, invest in cancer care and women’s cancers! Breast cancer affects one in eight and it is vital to invest and commit to improving access to the care patients need, and research to help beat cancer.
There are far too many similar stories as people living in Canada are waiting to be a priority. Cancer Action Now is working to bring forward challenges experiences by people in Canada living with cancer in accessing timely, high-quality cancer care, and calling on policy makers to make cancer care a priority.
Join the effort by signing up here. Stay connected by following us on Twitter, Instagram and Facebook.