fiona pic

My name is Fiona. I was diagnosed with Stage 2 Invasive Ductal Carcinoma in January of 2023 at 47 years old.
My story starts on the evening of December 3rd, 2022, when I happened to see a Facebook post from a dear friend stating she had just had her yearly mammogram, and how important prevention is. The thing is that my friend is a few years younger than me, and I had been told that in Manitoba you don’t start having mammograms until you hit 50. I was a few years away from that, and it hadn’t even crossed my mind. I had made a comment that I had never had one, and this is where my journey began.

This simple post opened the conversation that led me to where I am today. I was a busy wife and mother, and self-care was just not a priority. That said, my older sister had also seen my comment and mentioned that I should speak to my physician about a referral, as we had family history. I let her know that I would mention it to him as we had an upcoming phone appointment early in January.

At this point, I should say I am very grateful to have had the same doctor for around 15 years. We have a history, and he knows me well. At the end of our appointment, I brought up the fact that I would like to have a referral for a mammogram. Doing his due diligence, he asked why, and I gave him my reasons.
1. I have always had lumpy breasts, and self-exam is not something I was able to do, and
2. I had family history. My paternal grandmother had breast cancer. She was diagnosed very late in life, and it wasn’t what she ultimately passed from, but regardless, it was there.
He then agreed to send me for the test, and that was that.

I was surprised when within a week of the discussion with my GP, I received a call from the mammogram clinic, that they had an appointment for me. The date was set for January 11th, 2023.

Once in the procedure room, the technician asked me where I had found “the lump”. At once I knew there had been some miscommunication, and I said I hadn’t found a lump. She then asked about my family history. I let her know it was my paternal grandmother, and she gave me a bit of an exasperated look. She then let me know they had expedited my appointment, as they had interpreted it as being urgent. Me being me, I apologized and in turn felt bad for perhaps taking an appointment from someone who was truly urgent.
The mammogram was completed, and I was sent back to my cubby to wait, and the instruction was to not get dressed until I received the all clear. I waited for what seemed like a long time, but I figured it was only because they were busy. I then heard my name and was asked to follow a nurse into another room. I asked what was going on and was told that they wanted to do an ultrasound to get a better look at something they didn’t really like the look of. This worried me a little, but I had always been relatively healthy, and the whole “not me” mentality had set in. No worries I thought, I’m fine. Once the ultrasound technician started looking a little too serious, the anxiety got a little worse, but still nothing I couldn’t handle. She then told me she would be back in a moment and left the room. When she came back a few minutes later, she let me know they wanted me to go for a biopsy, as they had found a mass, and wanted to investigate it further. She also told me that the percentage of women who have breast biopsies that turn out to be malignant is low. This helped calm me somewhat, but this was not the outcome of the appointment that I had expected.

I was scheduled for the biopsy on January 17th and was told I would have the results within 2 weeks.
January 26th, nine very long days later, I received my diagnosis.
HR, PR+, HER2 negative (changed to low later) Stage 2, grade 3 Invasive Ductal Carcinoma.
Then came the appointment at Breast Health to discuss what my plan to move forward would be and what I should expect. The topic of genetic testing had come up; however, I was told I did not qualify. I am unsure as to why I was unable to get this test being that I was under 50, diagnosed with breast cancer, and had family history.

The plan was to have a unilateral mastectomy with reconstruction, and as far as I knew at the time, that would be it.
I went home that day and made the decision with my husband to spend the $500.00 USD to have the genetic testing done by a company that Breast Health had recommended. I filled out all the paperwork, was sent a kit, and sent it back to California to be tested. Ten days later I received a phone call from a geneticist letting me know that my test had come back positive for the BRCA1 genetic mutation. This meant the plan needed to change and quickly. My surgery had already been booked for the single mastectomy, but now this was on the table.
As of now (July 2024) I have gone through a bilateral mastectomy with immediate DIEP flap surgery, four rounds of chemotherapy (Docetaxel and Cyclophosphamide), four rounds of Zoladex to put me into medically induced menopause, quarterly infusions of Zoledronic Acid (to strengthen my bones), Aromatase Inhibitor called Exemestane for a minimum of five years, a salpingo-oophorectomy, and recently another surgery affectionally known as “Phase Two” of the DIEP flap surgery. All of these surgeries and medications have come with massive side effects, many of which I am still dealing with daily. The bone pain and cognitive issues are the two that seem to hinder me the most in my daily life.

I often wonder if I had waited until I was 50, as per the recommended guidelines, what my outcome would be today. I also wonder if I had started having regular mammograms at 40, if some of what I have been through could have been avoided.
What if I had not seen my friend’s Facebook post, let alone made a comment on it.
What if I couldn’t afford to have the genetic testing done?
These are very real concerns for me and should be for every woman in Canada. The guidelines need to change so that it is the normal standard of practice for women to start being screened once they turn 40. If a woman under 50 is diagnosed with breast cancer, regardless of any familial factors, she should automatically be eligible for genetic testing though Cancer Care.
There are way too many women who are unable to advocate for themselves, or don’t know they need to. I fall into the latter category. Why is the Manitoba government putting roadblocks in the way of women getting lifesaving care and in doing so could be saving thousands of dollars per patient by catching the cancer in its early stages?
Our survival depends on the Manitoba Government, and we need to be heard.

DBC Note: Fiona, We offer our heartfelt thanks for your courage and willingness to share your breast cancer experience. You ask such important questions and your story teaches us so much. Thank you also for all your advocacy to bring #40not50 to Manitoba.