Living in a remote community like Labrador City, NL comes with its own challenges. We have one grocery store with very high prices, gas is $1.34/L, and we lack normal everyday amenities such as movie theatres and night clubs. Traveling out of Labrador means a very expensive plane ticket or driving 7-14 hours (depending on which direction you choose) on a partially paved highway that has often been called a cow path in some sections. The most critical challenge, however, is access to adequate healthcare. I experienced this firsthand when I was diagnosed with cancer.
So, we could begin like all meeting group sessions do:
— Hi, hello. My name is Rebecca, I'm 37 and I have breast cancer.
— Hello Rebecca.
We could. Yeah.
According to breast cancer survivor Cathy Hemeon of Mount Pearl, Newfoundland, “Breast cancer patients offer up the best lived experiences and advice in terms of what the priorities should be for research.” Cathy, a CBCN board member, was therefore very pleased to participate in a national meeting that brought together Canadian patients, caregivers, and clinicians to set the top 10 priorities for research on post-mastectomy breast reconstruction.
We asked Tricia, a member of our patient advisory committee, to share her thoughts on our newest digital tool, the FinancialNavigator, designed to help connect patients with financial resources in their community. Here’s what she had to say.
I remember sitting in the small room waiting for the doctor to come in. I was nervous but didn’t think anything was wrong. The doctor came in and asked how I was. I gave my usual cheery response that everything was good but added that “it depended on what he was going to tell me…ha ha ha”. I laughed but my jovial manner quickly subsided when my doctor sat down and the words “it’s not good” came out. My heart dropped. He then said, “It’s cancer”. My heart dropped again.
In June 2015, I moved to London, Ontario and was recovering from a rather emotional and difficult time, having divorced in June 2014. I had moved from Sault Ste. Marie to be closer to my daughter with her husband and very young children. I would be seeing the rest of my family less often now – my parents, my two sisters, my daughter and her husband, and another granddaughter. and two step grandchildren.
My name is Alison Thompson and I was diagnosed with breast cancer five years ago. To give you some background, my mother was diagnosed with breast cancer about 15 years ago. Her cancer was an aggressive form. It spread to her spine and brain, and she passed away about three years after the initial diagnosis.
I was forty years old, running a successful business, comfortable in my finances, and feeling ready to settle down and start a family. Suddenly, a breast cancer diagnosis upended my sense of contentment and sent me on a journey of chemotherapy, immunotherapy, hormone therapy, a preventative double mastectomy, and, ultimately, reconstructive surgery.
For Andrea Sveinbjornson of Regina, the Canadian Breast Cancer Network’s new SurgeryGuide is an invaluable tool, one that she wishes she had when she had to make decisions about breast surgery in 2016.
In August 2014 I found a lump in my left breast. This is unusual for inflammatory breast cancer (IBC), a rare and very aggressive cancer where cancer blocks the lymph vessels.
Typically Stage IV triple negative breast cancer metastasizes to the bones, lungs, liver, and brain; however, mine is not in any of my organs. Mine was only in the left breast, both axillary lymph nodes, two on the left side of my neck, as well as two spots on my chest wall near the lung.
It was just another typical morning in our house, trying to get my son fed and dressed before I take him to daycare. As I am multitasking, getting myself dressed and making sure my son is actually brushing his teeth, I notice he’s watching me. He’s still trying to process those two large scars across my chest. The incisions are still fresh and slowly healing and turning to scars. Scars that represent where my breasts once were but now is just an empty space. He finally pipes up. “When are your boobies going to grow back, Mommy?” He asks so innocently.
“Abject terror floating in the back of my head.” That’s how Shelley Moore of St. Albert, Alberta describes her reaction to her 2014 diagnosis of Stage II triple negative breast cancer.
I was diagnosed with breast cancer in February 2016. My understanding of the language of breast cancer that allowed me to fully comprehend my diagnosis and treatment options, came long after the news. Long after the radiologist told me that my mammogram was “highly suspicious for cancer.” Long after the surgeon doing my breast biopsy spelled out that I had a mass in my left breast, at least two enlarged lymph nodes, and was facing “a very difficult year.” Using that language now, I had locally advanced, hormone responsive, HER2 negative, stage 2, invasive ductal carcinoma: T2N1. After that difficult year (and more), my cancer is in remission.
As a breast cancer survivor and board member of CBCN, I am very interested in how biosimilars will be used in breast cancer treatment in Canada. While not commonly understood today, biosimilars will soon be a household discussion among breast cancer patients. As patients, it is important for us to know how biosimilars will be used to treat cancer, especially if they are going to be used as effective alternatives to brand name treatments. Here are some of the points that I think are important for us, as patients, to consider.
I have been living with metastatic breast cancer for over eight years. While I am usually averse to using battle analogies for living with and dying from cancer, finding the best care has required a fight, considerable perseverance, and hard work. Fortunately, my ER+/PR+ tumours (pleura/liver/lymph) have responded well, but not great, to hormonal therapies. I’m onto my seventh line of treatment.
I went for my regularly scheduled mammogram in April 2014. The notice I received for my mammogram stated that I was to be screened annually because I had 'dense breast tissue’. This was the first time I had heard that term. When I went for my mammogram in Regina, I told the tech that my letter stated that I had 'dense breast tissue’. After the mammogram, she looked at the images and said yes, “dense breasts.” I had no idea what this meant for me, but I was to find out soon.
About 10 years ago, Charlotte Pennell was pruning bushes in her garden in Winnipeg. One branch seemed especially tough to cut. Then she looked down and saw that she was cutting her finger. She was horrified that she had so little feeling in her hand.
For Jenn Abbott, finishing treatment for breast cancer is like a flying trapeze. Having received her “NED” (no evidence of disease), she is in mid-air, no longer holding on to the bar that represents the medical team that saved her life, while at the same time, not yet catching the second bar that represents the rest of her life after cancer. She is in limbo, facing post-traumatic stress disorder brought on by her cancer treatment which included five surgeries and a severe adverse reaction to chemotherapy that meant she had to stay in the hospital for two weeks. She feels PTSD after cancer treatment is real.
January 4, 2010, I became a fly on the wall. I was at my surgeon’s getting results from my biopsy. It was supposed to be a quick appointment as the initial needle test of fluid prior to the biopsy was negative for cancer, or so we thought. I remember hearing the doctor telling me “unfortunately it was cancer….” I felt like I was having an out of body experience. I was there but literally watching over my body and the doctor from a distance. My world suddenly changed both physically and mentally.