BCAM; October 4th

Remember a few days ago when I talked about SEER and how those of us with Metastatic Breast Cancer (MBC) aren’t counted correctly? Well, that lack of accuracy affects a lot more than just knowing how many people are living with MBC, it also affects how we know the risk of those who have been diagnosed with early stage breast cancer to progress to Stage IV.

As it currently stands, we know that only 8-10% of those of us with MBC are diagnosed de novo, meaning from the beginning. The remainder of the estimated 155,000 men and women in the US living with MBC have had early stage disease that progressed to Stage IV. Based on the statistics and what we know, approximately 30% of men and women who are diagnosed with early stage disease will progress to Stage IV.

That’s an overall statistic, NOT the individual risk of each person, which is often hard to understand. Different subtypes have a different risk of progressing to Stage IV. For instance, someone with hormone positive breast cancer, like me, could progress from an early stage diagnosis to Stage IV 5, 10 or 20 years later. Those with tripe negative usually don’t.

Personal risk depends on so many different factors; however, when those men and women who have early stage disease are told they are cured, it is frankly a lie. I know that many want to believe they are cured. I know that doctors want to provide hope and positivity to patients; at the same time, I believe it is incredibly damaging for this myth to be perpetuated.

Adiba is like many women who were blindsided with a Stage IV diagnosis years after thinking they were cured. I’m not advocating for scaring women who have had early stage disease; at the same time, I do believe that telling women the truth about their risks and what may happen in the future so that they can be prepared, is the right thing to do.

It is not right for medical professionals to withhold information from patients. It is not right for breast cancer organizations to sideline those of us with MBC in favor of those who believe they are cured, perpetuating a cruel and misleading narrative. It is not right for our government to ignore those of us living with MBC and not even count us. It is not right for BCAM to be about pink and not raising awareness of the plight of this of us #dyingforacure.

Now you know more about risks and the misleading information in the public eye.

12 thoughts on “BCAM; October 4th

  1. My doctor’s assistant told me the other day that I am a very low risk, but she didn’t put a number on it. Reading your information makes me take the treatments and overlook the side-affects rather than to stop taking it.

    Liked by 1 person

  2. This is not a very good piece of news. I am lucky that none of my relatives – that I know of – have been diagnosed with breast cancer. I hope I don’t bring down the demon by mentioning the fact.

    Liked by 1 person

  3. So right, Abigail. The same is true for prostate cancer. I lost a friend last year who was “cancer-free” for over ten years. His cancer returned or rather multiplied to a level that could be detected. After going back into treatment, he passed away about a year later. Therefore, recurrence is always on my mind. I prefer using the term “NED,” as to me, it implies that cancer could be present, but it’s below detectable levels.


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