As told to: Lynda Sea
For some, a life-changing cancer diagnosis comes with added challenges due to varied cultural beliefs, stigmas and attitudes. We spoke to four Albertans from various cultural groups who share how their different backgrounds affected their experiences with cancer. Ultimately, each of them found that, by sharing their stories and talking openly about their experiences within their respective communities, they are making an impact on others, as well as healing themselves.
In 2019, Harjeet was diagnosed with a subcutaneous panniculitis-like T-cell lymphoma, a rare blood cancer. She was 32. Kaur’s diagnosis was complicated with hemophagocytic lymphohistiocystosis (HLH), an autoimmune disease she found out about after her cancer diagnosis. Harjeet grew up in India. She then lived in Dubai before moving to Edmonton in 2018. She was treated at the Cross Cancer Institute and the Tom Baker Cancer Centre when she moved to Calgary in 2022, and underwent a stem cell transplant during the early days of the COVID-19 pandemic.
“Cancer is a taboo and stigma in the South Asian community, specifically in the Indian communities. I’ve been advocating lots, because we don’t talk about cancer much.
“When I was going through treatment for one-and-a-half years — my stem cell transplant and chemo — my family never spoke to me about it. I kept everything inside and I was really frustrated and isolated by the end of the treatment. The worst part for me was you lose your hair when you’re having chemo and it was difficult for my family to see that. I kept my hair for two chemos because I didn’t want my dad or mom to see me with a shaved head, but I was struggling to keep my long hair.
“By speaking up, I’m spreading awareness within my community that there’s nothing wrong with sharing your journey, nothing wrong with showing your shaved head, nothing wrong with going through cancer treatment and talking about your feelings. I think these were my mistakes. When I was diagnosed, nobody wanted to talk about it. Nobody asked me how I was feeling. Everybody was like, ‘You’ll get over it. Just think positive.’
“For one and a half years, I kept all my feelings about my diagnosis and treatment journey to myself and it was so difficult. When I started writing my blog, My Cancer Battle, I used to write about my feelings because I was not able to discuss them with family and friends.
“I wanted to break through the stigma and reach out to more Asians in Alberta about the cancer experience. I wanted to show them the importance of discussing their diagnosis, being their own advocate when it comes to their health and listening to their body when they feel something is not right. I’ve been more vocal, sharing my journey and telling my story as a volunteer, patient advocate and on social media. I feel that it’s part of the healing process. Now that I’m sharing it, it’s empowering others to talk about their experiences with cancer. I know it takes time, but nobody should think that they are alone during this journey.”
A resource Harjeet recommends: Elephants and Tea
This is a magazine written for and by adolescent and young adult (AYA) patients, survivors and caregivers. Learn more at elephantsandtea.com.
Gurpreet, who is originally from India, moved to Calgary in 2015. In 2013, she lost her mom to breast cancer. She currently works as a philanthropy associate at the Alberta Cancer Foundation.
“My mother was diagnosed with stage 2 breast cancer in 2007. Before her formal diagnosis, she had a feeling that something was wrong and feared it might be cancer. However, she chose not to share her concerns with anyone, especially me, because it was my time to pursue my dreams of higher education in Chicago. In 2012, my mom’s cancer resurfaced, and, during that time, I was fortunate to be able to return to India and spend a few months with her. It was a precious time we shared together. However, I had to return to the States due to work obligations, and, deep down, both of us knew that it would likely be our last meeting.
“I think my mom was in denial about her cancer. It was the culture, as well — growing up, if I had any health issue, my mom would say, ‘Don’t tell anyone. Just keep it to yourself.’ All my life, this is what I heard the most: ‘What are people going to think? What are people going to say?’
“She had many rounds of chemotherapy and radiation and a surgery. Because of the mastectomy, she thought, ‘I don’t look like a woman.’ My dad started going to a lot of temples and places of worship so my mom could get better — that was his mentality.
“There are so many stigmas around cancer that are still prevalent in our society. And not just in the South Asian community, but in general, too. I’ve learned that you have to be your own advocate, even for cancer screening. In 2016, we had a trip planned to Hawaii and I was changing clothes and I felt a lump in my breast. With my mom’s history, doctors wanted to be more diligent and I went in for a biopsy. It came out as fibroadenoma [benign tumours in the breast tissue]. I get a mammogram yearly, but if I find a new cyst that did not exist before, then I go for testing. I have to tell my doctor, I need this — even if she says it’s no big deal, it’s a big deal for me.
“The reluctance to undergo cancer screening within the South Asian community can be a combination of factors — the fear of receiving bad news, the stigma around cancer in the community and a general lack of awareness regarding the benefits of screening. My key message to all the patients and cancer survivors going through treatment is that you have to listen to your body, take your time and don’t struggle alone.
“We need more people to share their stories. They would not only receive the support they need, but also inspire others to be proactive about their own health. A lot of people don’t realize that early diagnosis leads to better outcomes.”
A resource Gurpreet recommends: Mobile Breast Cancer Screening
Screen Test started in 1991 and allows Albertans to undergo breast cancer screening in their own communities. The mobile screening units travel to 120 communities throughout Alberta. Learn more at screeningforlife.ca.
Bayo lives in Calgary, and moved to Canada from Nigeria 23 years ago. In 2016, he was diagnosed with multiple myeloma, a type of blood cancer. With his wife, Yinka Oladele, he runs The Oladele Foundation, which started the African Cancer Support Group for Calgarians in 2018. They also wrote the book, Second Chance: Surviving The Battles of Cancer to destigmatize cancer for African Canadians.
“Before diagnosis, I was experiencing pain all over my body. I’d go to my family doctor and he kept giving me painkillers and doing blood work. He said there was an elevation of protein in my body. I didn’t know what it meant and he didn’t tell me what it meant, either.
“After receiving the multiple myeloma diagnosis, I didn’t know its gravity. I had never heard that word before in my life, so I didn’t know what they were talking about. Then they said it’s a type of cancer.
“The challenge we have, in the African community, is that nobody wants to talk about cancer. In the past, when you had cancer in Africa, it was assumed that the individual was going to die. It’s just a misconception of how cancer really affects people.
“Before I was diagnosed, I didn’t actually pay much attention to cancer. It was not one of the what-ifs. In my community, I didn’t see people who were cancer survivors. Nobody wants to say they had cancer, so no one actually knows anyone who is a survivor. That gives the impression that everyone who had cancer has died.
“But cancer does not mean a death sentence. We want our community to talk about cancer and discuss it openly so we can collectively support anyone going through cancer. When we wrote the book, the community was surprised that somebody was bold enough to talk and write about cancer. Then we discovered other people that have cancer within the community — and nobody had known.
“In 2018, my wife and a friend went for community support group training with the Canadian Cancer Society and we wanted to translate this into helping our own community. That’s when we started the African Cancer Support Group.
“Because Africans are such people of faith, we also started bringing those that have cancer and other diseases together for prayers and discussions. That’s when we started what we call the Second Chance Healing Conference in 2018. Our goal is to support anyone going through cancer and to educate the community about the importance of cancer screening and prevention. At the end of the day, we want to reduce the number of people dying.”
About the African Cancer Support Group (ACSG)
ACSG is based in Calgary and supports anyone within the African Canadian, Caribbean Canadian and Black Canadian communities going through cancer and other chronic diseases. It was started to support survivors, patients and caregivers, and for them to de-stigmatize cancer by sharing stories, symptoms, information and coping strategies. For more info, visit africancancer.ca.
Bob is Métis and lives in Calgary. He was diagnosed with prostate cancer in 2019. He is now a stage 4 metastasized prostate and bone cancer patient.
“I’ve been fighting cancer for about four years now. I was suffering from an enlarged prostate. I would go and get it checked, but nothing ever really came of it other than doctors examining me with a cystoscope and giving me medication for the discomfort and pain. In 2014, I had to go in for a transurethral resection of the prostate, which is an invasive treatment option. But, by 2018, I couldn’t even go to the washroom to pee and was in a lot of pain. I went to the emergency room, where they did another resection. They also took a biopsy at that time and that’s when they found the tumour.
“I did not know I was not being taken seriously prior to diagnosis. I did not know the questions to ask and didn’t understand the consequences of nipping it in the bud as soon as possible. I feel you’ve got to be suffering before you seem to get attention. I bugged the doctors, the oncologists and the urologists through the years, but they put it down to an enlarged prostate. They didn’t educate me and explain, because they’re so busy. It’s your job to become aware, to ask questions.
“The Prostate Cancer Centre [PCC] at the Rockyview General Hospital has been my home base. I’ve also spent a lot of time at the Tom Baker Cancer Centre, mostly for tests and treatment, but I never saw one Indigenous person, that I know of, in the four years that I’ve been getting treatment. I know they go, but I don’t see them.
“Indigenous People seldom are diagnosed, because they prefer traditional ceremony and herbs. There’s great mistrust for the medical system. If Indigenous People want to do their traditional healings, there’s nothing wrong with that, but they should also consider taking Western medicines, procedures, surgeries and whatever else can help them so they live longer.
“I’ve been volunteering with the PCC and through another men’s group called Prostaid Calgary Society. Their role is to provide support for men. And I’m an Alberta Health Services volunteer with the Patient and Family Advisory Council for the new Calgary cancer centre. I also proposed a pilot program to [Wellspring Calgary and PCC] to help support rural Indigenous men to come into Calgary to get their treatment.
“Indigenous People have serious mortality rates and if they’re diagnosed with cancer, it’s like the thought is, ‘What’s the point?’ That, to me, means they need treatment all the more. A lot of awareness and education needs to be done with Indigenous communities, and that’s the hardest part. Don’t ignore it; that’s the worst thing you can do.”
About the Prostate Cancer Centre (PCC)
The PCC fights prostate cancer by delivering one-stop support to men and families through rapid access to personalized care, research and education. It promotes overall health and well-being, and reduces the impact of prostate cancer in the community. Learn more at prostatecancercentre.ca.