Though I often write about metastatic breast cancer, I haven’t written a whole lot specifically about recurrence. Not sure why this is.
So, let’s talk about it.
There continues to be confusion about breast cancer recurrence. Some still cling to the myth about being out of the woods once that magical five-year marker is reached. Some still have doctors who suggest they are cured, when in fact, they are actually NED (no evidence of disease). Some claim to have “beaten” cancer, a statement that always mystifies me.
Updated September 2019: You might want to read, What Does Beating Cancer Mean Anyway?
What is a recurrence exactly?
For clarification purposes, recurrence and metastatic breast cancer are not necessarily the same thing. A recurrence can be local, regional or distant.
A local recurrence means the cancer has come back in the breast, or in the scar (in case of mastectomy).
A regional recurrence indicates the new cancer is in the lymph nodes of the armpit or in the collarbone area.
Metastatic breast cancer means the cancer has spread to other organs of the body typically the bones, lungs, brain or liver. This is also referred to as distant recurrence.
A diagnosis of any of these is, of course, devastating though treatment and outcomes are not the same for all. It should be mentioned that 6% of breast cancer patients are stage IV at time of diagnosis. 20% to 30% of patients diagnosed at an early stage will develop metastatic disease.
Learn more about recurrence and metastasis here.
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One thing’s for certain, after a woman (or a man) is diagnosed with breast cancer, she/he thinks about recurrence. Not talking about it does not mean not thinking about it. Of course, the frequency and intensity of such thinking varies from person to person. A lot.
I don’t actually think about recurrence all that often.
Does this surprise you?
Sometimes I wonder myself why I don’t worry more about it. Perhaps it has something to do with the fact I am a procrastinator. Perhaps I am a procrastinating sort of cancer recurrence worrier too.
The way I figure it, why worry about something that is out of my control?
I’ve done, and am still doing, what I can to prevent a recurrence. Beyond that it’s pretty much a crap shoot.
If applicable, does your family talk much about recurrence?
While we do not talk about recurrence much in my family, everyone knows way too much about it because we all remember my mother’s experience. She was diagnosed at an early stage. Low grade. Her cancer still metastasized.
Broadly speaking, the greatest risk of recurrence is during the first two years following diagnosis. Certain more aggressive breast cancers are more likely to metastasize early on, before the five year benchmark. Others, like my mother’s and mine (ER+,PR+), are less likely to metastasize early on, but can and sometimes do many years later. A reader (thank you) shared this piece, Understanding the Risk of Late Recurrence of Breast Cancer.
The bottom line is, there’s no guarantee.
The five-year benchmark suggesting you’re cured is a myth that has been perpetuated for years partly due to Pink Ribbon Fantasy Land hype.
Many women (and men) do struggle with recurrence worries.
Perhaps adding to this worry (for me anyway and perhaps for you, too) is the fact that generally accepted oncology guidelines suggest not doing any scans or tests without symptoms.
This is hard for many of us to adjust to partly because for years it’s been pounded into our heads that early detection is the holy grail when it comes to “beating” breast cancer. Again, this is in large part due to pink ribbon culture messaging hype. It’s not quite that simple.
Now, we’re told the opposite. Early detection isn’t so important. No symptoms. No scans. No tests.
Talk about a major shift, right?
Now it’s more of a wait and see attitude. No wonder we stress about this!
This is why being told, just put it (cancer) behind you and move on, isn’t fully doable.
Regardless of stage, we all get on with the business of living and enjoying our lives, but getting over cancer isn’t a realistic expectation. And of course, it’s an impossibility if you’re metastatic.
Personally, I would love to be sent through a scanner once a year to see what the heck is going on in there. But this isn’t how things work.
In an upcoming post, I’ll share strategies and suggestions to help you (if applicable) cope with recurrence worries. I would love to hear from YOU.
Learning and sharing how others cope with recurrence worries helps us all. So…
Let’s talk about it.
If applicable, do you think about recurrence rarely, now and then or a lot?
Again, if applicable, how do you manage recurrence worries? Specifically, what do you do?
If you are metastatic, how do you manage progression worries?