“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.
I’m from Ottawa. I was diagnosed de novo in March 2011 with metastatic breast cancer and metastasis to the bone. I am 53 years old. I am a mother, daughter, sister, artist, lesbian, atheist, and gardener.
Cindy Blondeau of Moosomin, Saskatchewan is pleased that the federal government is legalizing marijuana. For this metastatic breast cancer patient, pure CBD oil from this plant works better than any other painkillers that she has tried.
“Go UP the stairs. Slide DOWN the slide. No, Sweetie. Go UP the STAIRS.” She could barely walk, but she was climbing up the slide. Then, and now. Spend ten minutes at a playground, and the appeal of climbing up the face of the slide is undeniable. I am acutely aware of the dangers of falling off the slide, the risks of children bumping into each other. I vaguely remember falling off a slide, decades ago--one of the old, tall ones—before playgrounds had soft surfaces. I like to see everyone going in the same direction. Up the stairs. Down the slide. Nice, orderly, predictable, and safe.
Montreal resident Kelina feels like a “sitting duck” because although researchers are working hard to find treatments for triple negative breast cancer, there are no targeted therapies available to this cancer, which was diagnosed in December 2015.
At the age of 46, I was diagnosed with stage two/grade three multifocal, invasive lobular and ductal breast cancer. I had found the lump myself after a year of constant infected cysts in my breast. I had been told I had very dense breasts, which is part of the reason the cancer was not visible on a mammogram. I had it confirmed by biopsy and had a right mastectomy followed by four rounds of chemotherapy. Six months later, I chose to have my left breast removed and began reconstruction.
It’s good to set challenging goals.
I ran my first marathon the year I turned 50, and completed another two years later. I loved establishing training goals that would force me to push myself physically, and feeling healthy and strong as the result of running regularly. In November 2015, I decided on a new goal: to run another marathon in the fall of 2016, and complete it with a time fast enough to qualify for the Boston Marathon.
When I started getting sick in the late summer of 2011, I was pretty sure I knew what it was. I thought my endometriosis was "acting up." Then my symptoms changed and a Google search convinced me I needed my gall bladder removed. I exaggerate, but the point is that while my disparate symptoms piled up, I was sure there was a simple explanation. Cancer never entered my mind, even when my gynaecologist found a lump in my breast I hadn't noticed.
My journey began on New Year’s Eve 2015, when I noticed a red mark on my right breast. It wasn’t long before my stomach dropped and I felt my face flush while my throat did that swallowing action reserved for moments just like this.
Wendie Hayes of Stoney Creek Mountain, Ontario was diagnosed in 2011 with triple negative metaplastic phyllodes breast cancer at the age of 55 after she discovered a lump in her left breast. Her cancer is a rare type, affecting less than one percent of breast cancer patients, so it took some time to get the right diagnosis.
It seems impossible to try to capture the essence of who someone is, was, through just words. Because there are no words that really do justice to honour a person like Laurie Kingston and how her life touched so many people, people she didn’t even know. It is with great sadness that we mourn the loss of Laurie, one of CBCN’s board members, who passed away on January 8, 2018.
I was not prepared for the number of decisions regarding treatment that needed to be made from cancer diagnosis to treatment options. It was both exhausting and overwhelming – how does one make sound life-changing decisions when there are so many options and choices? I learned to trust myself and be my own advocate as I navigated through the many decision points.
For Naomi Pickersgill, living with metastatic breast cancer and being confronted with her own mortality has been a “roller coaster of emotions.”