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The Voice of People With Breast Cancer

Education

Our Voices Blog

The views and experiences expressed through personal stories on Our Voices Blog are those of the authors and their lived experiences. They do not necessarily reflect the position of the Canadian Breast Cancer Network. The information provided has not been medically reviewed and is not intended to be a substitute for professional medical advice. Always seek the guidance of your healthcare team when considering your treatment plans and goals.

Getting Through My Worst-Case Scenario

By Rebecca Dahle

The worst weeks of my life had finally come to an end. It had been six weeks since my lumpectomy. Six terrifying weeks, living with many unknowns, in a state of complete disillusionment. But the wait was finally over because today I would meet my medical oncologist for the first time, she would go over my pathology report, and reveal my treatment plan. Going into the appointment I felt ready to face whatever would come my way. After experiencing the darkest days of my life, I had emerged feeling strong and optimistic. I had done a lot of research and decided that the odds were in my favour, I could beat this… unless I had triple negative breast cancer (TNBC), because that was a different story. However, I wasn’t worried about that because I knew that TNBC only makes up 10-20% of breast cancers and that aside from my age, I didn’t really have any risk factors. So, there I was, full of hope, when I was hit with what I had identified as the worst-case scenario. As soon as I heard “Your cancer is triple negative”, I burst into tears. I don’t remember much of the appointment after that.

I had a lot of time to think and question things between my lumpectomy and first appointment with my oncologist. I didn’t have any experts to ask, so I turned to the internet. I know that Googling is one of the worst things you can do but my curiosity and need for answers got the best of me. Before I knew I had breast cancer, I didn’t even know that TNBC existed. My mom, who was doing very well, had hormone receptor positive breast cancer and I, like many others, thought that was the only kind. I didn’t spend a whole lot of time reading about TNBC, just enough to know that I didn’t want it. I read that TNBC, which doesn’t have receptors for estrogen, progesterone, or HER2, is known as an aggressive form of breast cancer with few treatment options. I also read that it is the most likely to recur, usually somewhere else in the body, within the first five years after diagnosis. That’s some scary stuff!

The hits didn’t stop with my TNBC diagnosis. I was already aware that I would need radiation because I had chosen to have a lumpectomy over a mastectomy but I had hoped to avoid chemotherapy. It was another blow to find out that due to its aggressive nature, TNBC is almost always treated with chemotherapy regardless of the size of the tumour or extent of lymph node involvement.  

Given that I was 39 at the time of my diagnosis and that TNBC is often associated with a BRCA mutation, I was also referred for genetic testing. After another excruciating eight week wait, I found out that I had tested positive for a BRCA1 mutation. I burst into tears yet again when I got that news. How could this be happening? Although my mom had been diagnosed with breast cancer two years before me, there was no other family history of the disease. My thoughts turned immediately to my four daughters. Now I was not only worried about myself but my innocent children who we now know have a 50% chance of also carrying the mutation.

Not only does a BRCA1 mutation confirm hereditary risk, it also comes with the recommendation to undergo further surgery. The lumpectomy that they recommended to me at first was no longer considered enough. I would need bilateral mastectomies to protect me against another breast cancer diagnosis down the road. What’s more, not only was I going to lose my breasts but also my ovaries and fallopian tubes and I was advised to have that surgery as soon as possible. BRCA1 carriers have up to a 45% chance of getting ovarian cancer and surgery to remove the ovaries and tubes is recommended between the ages of 35 and 40 or after childbearing is complete.

A cancer diagnosis in and of itself was already a worst-case scenario. At the beginning of my cancer journey, it felt like just when things couldn’t get any worse, they did. As soon as I would get over one hurdle another would present itself. What I had a hard time getting over was hoping and praying for good news and getting the opposite, what I considered the worst case-scenario. There were many times that I lost all hope and believed that my life was doomed. I know that things could have been a lot worse. My mom, who was doing well and showing no signs of disease at the time of my diagnosis, died at the age of 62 while I was still in treatment. I’m still here and I have a lot to be grateful for. Although the road to recovery is long, I am a survivor and one day I will thrive again.  

I’ve made it through chemo, radiation, four surgeries, being admitted to the hospital for six days due to a post-operative infection, a clinical trial, bone scans, ultrasounds, multiple biopsies, mammograms, MRIs, CTs, and a countless number of other things that my pre-cancer self could never have fathomed. I have learned so much about cancer but more importantly I have learned about myself and the value of relationships. I have faced matters of life and death and learned to grieve and comfort others who are grieving. I have overcome what in my mind was the worst-case scenario, and I am better for it.

For those who are newly diagnosed:

Don’t Google. Really. Don’t do it. All it ever did was scare me and almost none of what I read actually came to be.

Don’t guess or try to predict an outcome. You can’t tell the future. Don’t worry until there is something to worry about.

Live in the moment. Take it one day at a time. It isn’t just a cliché, it actually helps.

Even your worst-case scenario can be overcome. Don’t give up.