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Breast Cancer Recurrence, Let’s Talk About It

Breast cancer recurrence; let’s talk about it.

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. Others have doctors who suggest they are cured, when in fact, they are actually NED (no evidence of disease). Still others claim to have “beaten” cancer, a statement that always mystifies me.

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. 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?

Mine doesn’t.

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. Hormone positive. 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 exact 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 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?

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Breast Cancer Recurrence, Let's Talk About It


Wednesday 18th of May 2022

I think often about the possibility of a recurrence, even though it’s now twenty-three years since my diagnosis (stage I, grade 3, triple-positive). I know it can still recur.

Every time I have a pain that doesn’t resolve within two weeks, I’m convinced it’s a metastasis. I don’t rush to a doctor, but I do worry. Last time (three years ago), I “knew” my knee pain was a bone met. It turned out to be severe arthritis (I was seventy at the time). Now I have neck and shoulder pain and I’m sure it’s a met (or a new, different cancer).

Btw, I too have no idea what “beating cancer” means.

Thank you for what you do, Nancy.


Thursday 19th of May 2022

Caroletta, It's interesting, and understandable, that even after 23 years you still think about recurrence. I'm glad you continue to be NED. And yeah, that whole beating cancer phraseology has always mystified me. Thank you for reading and commenting too. Hoping you remain NED.

Wendy Brooks

Saturday 18th of September 2021

I'm now 7 years out. I was diagnosed with bilateral cancer (lobular in one breast, ductal in the other, both low grade) the lobular had been present for 5 years and undetected with yearly mammograms (they can tell by comparing old to new scans). My cancer was finally confirmed after 2 ultra-sounds were negative, at my 3rd appt I said I wasn't leaving until someone would agree to biopsy the "weird stringy feeling" that I felt in my breast. Lobular is very difficult if not impossible to detect on scans (mammograms, ultra-sounds, MRI). Having a cancer that can't be detected is stressful, I worry less about recurrence now than I did. I follow the latest research in lobular cancer, particularly advances in scanning techologies. I continue to tell my story when asked, education is critical in saving lives. Thank you Nancy for your writing and all the advocacy work that you do.


Monday 20th of September 2021

Wendy. Lobular breast cancer can be tricky, in more ways than one. Good for you for self-advocating so effectively. Keep telling your story. People need to hear it. Thank you for sharing and for your kind words too.


Friday 17th of September 2021

I knew my risk for recurrence was high (premenopausal triple negative breast cancer, Gr 3, found only months after a clean mammo. It was a freight train of a cancer). And sure enough, 26 months later I had mets in lung and liver - I mean the odds were ~1/3 so....

Now I have scans every 12 weeks to monitor for progression. The reality is this disease will kill me, and pretty quickly too. I'm approaching a cliff and each scan is just telling me how quickly it's happening.

I'm frustrated how many women do not realize they're not 'cured', & I hate the word 'survivor'. And it's not just because I will now never be one. It's an aspiration....we just can't tell who will and won't survive early stage breast cancer and far too many are blindsided by a metastatic recurrence, thinking they were in the clear.


Monday 20th of September 2021

indefatigable, A freight train of cancer - no kidding. Not a fan of the survivor label either, though I use it sometimes because I've yet to come up with an alternative that people understand. I agree, it's more an aspiration. And I hear you regarding your frustration. Many women believe they are cured when, in fact, they are more likely NED. Thank you for sharing some thoughts on recurrence.

Linda C Boberg

Wednesday 15th of September 2021

I have MBC and I worry all the time about things getting worse. I've been stable (nothings changed) a long time now, but it only makes me worry that something big is going to happen soon. I don't know how NOT to worry and if there are good suggestions, I can't wait to read them. Worry only makes things worse. And I know I should be enjoying the stable days while I can.


Monday 20th of September 2021

Linda, It's understandable that you worry about things getting worse. I mean, how could you not? At the same time, I agree worry usually is unproductive and yes, can make things worse. And yet...I appreciate your thoughts on this. Thank you for sharing them.


Friday 25th of September 2020

I would add to my comment above that after a certain point MOs rarely discuss recurrence risks in any depth with patients - at least, that's my experience. I had some follow up testing at the 5 year mark and my MO gave me a sheaf of printouts of the results of a number of studies but that was all, other than reminding me of symptoms of metastasis to report.

I'd be curious as to what others' discussions with their MOs have been like and if they felt it has been helpful.


Monday 28th of September 2020

Julia, Mine doesn't talk about it. Unless I bring it up.

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