Did you know that many women who have breast cancer cannot properly identify the characteristics of their disease? A new study showed that only 20% to 58% of women surveyed could correctly report the characteristics of their tumours (stage, grade, HER2 status, and hormone status). Although this lack of knowledge was lower in minority women, knowledge was generally poor across all the women.

So why is this important? The authors of the study state: “For cancer patients, understanding the characteristics of their own cancer, such as stage and receptor status, is also likely important. Such tumor-specific knowledge may lead to a better understanding of treatment rationale (eg, endocrine therapy for hormone receptor-positive tumors), enhanced decision making, better treatment adherence, and more empowered patients.” In other words, education is key in ensuring patients understand why certain treatment options are presented and allowing them to feel empowered in making decisions about their health.

As a young woman who was diagnosed with breast cancer at 28 years old, I can relate to the feeling of being overwhelmed with information. In those early days after the diagnosis, there’s a natural tendency to want to put on blinders and ignore the reality of what lies ahead of you. The more facts you have, the more real it becomes – which can be scary.

But as that cheesy poster hanging on your classroom wall used to say: knowledge is power. Seriously. The only way you can advocate for yourself is to know what you’re advocating for. Because I have all the facts about my own disease and its many characteristics, I’m able to ask my oncologist about new treatment options that may benefit me, and better understand what my risks are and what decisions need to be made. Of course, it’s good to have faith in your medical team. But the fact is that the person who is most invested in your health is you, so if you don’t feel you have a solid awareness of the basics of your disease – it’s time to get educated!

The study authors presented the women with 4 survey questions about their breast cancer:

1 – What was the stage of your breast cancer?

The stage of breast cancer refers to how advanced your cancer is in terms of its ability to spread throughout your body. It is determined based on the size of the tumour, the number of lymph nodes affected, whether it has invaded the surrounding tissue, and if it has spread to other parts of the body. Breast cancer can be staged from 0 to 4, with various sub-stages in between. Breast cancer stage can help your doctor determine your prognosis. Although it tends to be the factor that is most discussed and understood when referring to a breast cancer diagnosis, it is not the only characteristic you should know… there’s more to the story!

2 – What was the grade of your cancer?

Tumour grade looks at how abnormal the cells appear in your tumour – the more wonky the cells look, the more your tumour is thought to be “poorly-differentiated” and higher grade. Higher grade tumours tend to grow faster and be more aggressive. In breast cancer, your cancer is given a grade of 1, 2, or 3. Tumour grade can be very important in determining your treatment plan, as lower grade tumours tend to need less aggressive treatment. In my case, my cancer was high-grade, which was an indicator that I might benefit from a more intense treatment regimen, such as doing chemotherapy. Unfortunately, breast cancer in younger women tends to be higher-grade, and more aggressive than it is in older women… as if us gals didn’t already have enough to deal with.

3 – Was your cancer type HER2-positive?

If you are HER2-positive, this means your cancer cells make an excess of a type of protein that promotes the growth of cancer cells. HER2 status was something I had never heard of in my life, previous to being diagnosed with it. When I first learned I had HER2+ breast cancer, I flew into a state of panic, as it’s known as having a poorer prognosis than other types of breast cancer. Google was not my friend that day. However, upon doing more research and educating myself, I learned about all the amazing breakthroughs for HER2+ cancer, particularly with a drug called Herceptin that has been shown to significantly improve survival rates for women with HER2+ breast cancer. Although HER2+ can be seen as a negative prognostic factor, scientists have also figured out how to target it, and personalize your treatment to attack those pesky cells. Pretty cool, right? Thank you, science!

4 – Was your breast cancer estrogen receptor-positive?

Estrogen receptor-positive (ER+) breast cancer has cancer cells that may receive signals from estrogen that will promote cell growth. Knowing your breast cancer hormone status is a critical factor in planning your treatment, as there are various drugs and methods that can help manage the estrogen in your body and its ability to activate cancer cells. A common drug that many ER+ women take to prevent recurrence is called Tamoxifen, which is taken orally in pill form. These medications or other treatment options such as ovarian suppression can have side effects that may affect your quality of life. It’s important to understand your ER+ status so you can better understand your risk of recurrence and discuss your options with your oncologist. There are ways to help with unpleasant side effects and there may be alternatives to help deal with the ER+ side of your cancer. So make sure to speak up if you have questions or concerns.

A mere 8% of the women surveyed were able to correctly answer all four of these questions. This shows that there’s a definite need for greater education and awareness surrounding one’s own breast cancer diagnosis. It would be great if medical professionals did a better job at explaining the details of a patient’s disease, but the power also exists in your very own hands to ask questions, read up, and get informed. So hop to it!

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