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.

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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.

Desiree’s Story: A Mother’s Fight to Drive Change for People in Canada Living with Cancer 

For over three years, Rosan has been fighting relentlessly to share her daughter, Desiree’s story, who passed away two days before her 35th birthday due to a late-stage cancer diagnosis. 

Desiree was first misdiagnosed in 2020. She initially went to her family doctor, complaining of heavy bleeding and excruciating pain in her uterus. For two years, she was continuously misdiagnosed with endometriosis. Despite their family history of cancer, her symptoms were overlooked due to her age – she was only 34. 

The COVID-19 pandemic didn’t help Desiree’s situation. Unable to secure in-person appointments, Desiree’s consultations were all conducted over the phone and her physical condition was never officially examined until 2021. At this time, Desiree received an ultrasound revealing a 0.8mm polyp.

The technicians had recommended she urgently see a gynecologist, but the referral never came. A few months later, Desiree’s polyp had grown to 16mm, and her condition continued to worsen, yet it still took months to secure a referral, and only after she had been seen in the E.R numerous times. 

To control her symptoms, Desiree was put on birth control, which only worsened her high blood pressure and depression. Multiple hospital visits later, a mass was finally discovered in her ovaries, thanks to Rosan’s relentless push for more tests.

By the end of 2022, Desiree was diagnosed with stage 3 endometrial cancer – a diagnosis that was given to her over the phone. 

Desiree underwent five stages of chemotherapy, four stages of radiation and a hysterectomy, leaving her with a stint in her bladder after the surgeons cut into her bladder and she hemorrhaged. She was discharged from the hospital, only to be rushed back 72 hours later due to unbearable pain. This led to a two-day stay in the ICU, and days in the hospital, interfering with her much needed chemotherapy, during which her cancer spread aggressively.

Desiree began receiving radiation treatments for her pain, and she was preparing to start more rounds of chemotherapy. During one of her radiation visits, Desiree began complaining about severe pain in her leg and hip, only to be dismissed again, and Desiree could no longer bear weight on her leg. After an x-ray she was told that she was at risk for a pathologic fracture and was sent to see an orthopaedic surgeon. This surgeon scheduled surgery on her left hip despite being at risk for complications and infection and still recovering from her hysterectomy just a few weeks prior.

Almost immediately after surgery, Desiree started to show signs of infection. Despite Rosan’s demand for an explanation, she was not taken seriously by her surgical team.

Only five days later, when Desiree’s condition was declining rapidly did the doctors test for infection and found she had sepsis.

Due to these delays, Desiree passed away in the hospital only days away from her 35th birthday, and on the day of her 35th birthday which should have been a celebration, Rosan had to identify her deceased daughter’s body. 

Throughout this ordeal, Rosan faced a dreadful choice between financial ruin or saving her daughter’s life. Immunotherapy was expensive, and the healthcare system offered little help. “The system failed my daughter and us, and she paid the ultimate price,” Rosan stated as she reflected on her daughter’s journey. Desiree’s journey from screening to late-stage diagnosis highlights a broken system. Endometrial cancer is curable at stages 1 and 2, but a broken system resulted in Desiree’s misdiagnoses and fractured medical system resulted in her late-stage diagnosis. 

Rosan continues her fight, hoping that sharing Desiree’s story will bring about much-needed change in a system that failed them when they needed it most.

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.