Should Certain Breast Cancer Patients Extend Endocrine Therapy Beyond Five Years?

Did you read the recent headlines about the newly released study concluding that even after women (in the study) completed five years of hormone therapy, their recurrence risk continued for twenty years and likely beyond? The implication is that women diagnosed with early stage, hormone-positive breast cancer and who are taking hormone-blocking drugs, should strongly consider staying the course beyond five years, or in other words, continue hormone therapy for ten years.

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.

My first reaction to such headlines was, didn’t we already know that breast cancer can recur decades later? 

Remember Olivia Newton John’s recent announcement? I don’t actually know what her initial diagnosis was or if she ever took hormone-blocking meds, so I probably shouldn’t cite her case, but you get my point. Recurrence can, and sometimes does, happen years later.

I’m not sure if there have been similar studies to the one I’ve cited above (and below), but this one seems to be a pretty big deal. Hormone-positive is the most common type of breast cancer, so there are a lot of women impacted here. The conclusions of this study are timely for me because as I write this post, I am contemplating whether or not to stay on my “chosen” aromatase inhibitor, Exemestane. I’ve also been contemplating (again) having the Breast Cancer Index Test.

I’ve completed seven years on an aromatase inhibitor, or as I like to refer to them, the drugs we love to hate. I’ve only got three more years to go. That’s not so bad, right? The end’s in sight.

Well, yes. But…

I have side effect issues and a new one was revealed following my last oncology visit. But enough about me. Back to this study…

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This study was fairly large, involving nearly 63,000 women who were diagnosed with early stage, ER+ breast cancer and who were all NED after completing five years of prescribed endocrine therapy.

The results of the study as stated in the New England Journal of Medicine were as follows:

Breast-cancer recurrences occurred at a steady rate throughout the study period from 5 to 20 years. The risk of distant recurrence was strongly correlated with the original TN status. Among the patients with stage T1 disease, the risk of distant recurrence was 13% with no nodal involvement (T1N0), 20% with one to three nodes involved (T1N1–3), and 34% with four to nine nodes involved (T1N4–9); among those with stage T2 disease, the risks were 19% with T2N0, 26% with T2N1–3, and 41% with T2N4–9.

The T stands for tumor and the N stands for nodes. Just in case you need a refresher in how breast cancer is staged, click here. And btw, in January 2018, changes are coming in how cancer is staged. (We can discuss that next year.)

Based on this study and other things I’ve read, here are some of my observations specific to this study, early stage, ER+ breast cancer and that five-year “all-clear” myth:

1. This study shoots a hole in the early detection messaging that is often misleading. 

And no, I am not saying early detection isn’t important. It is. However, it’s not all that matters. Tumor biology matters. A lot. As do other things, such as access to quality healthcare.

2. If your doctor or someone else suggests you are cancer free after five years (or ten, or fifteen or even twenty) think, red flag. 

As this study concludes, the idea of being considered cancer free after five years is simply not true when referring to ER+ breast cancer and both patients (including celebrities) and doctors need to stop saying/suggesting otherwise. Early detection, five years – neither guarantee that you’re home free. This is just reality. In some ways, this is the bigger part of this particular story.

3. It’s vital to have access to copies of your pathology report and other medical records for reference.

Our memories fail and our situations change, so we need to be able to go back and read reports. Just recently I did this and made a couple interesting discoveries, things I hadn’t thought about before. Hindsight sorta works like that, right?

4. You know your body and your situation best. 

If you’ve opted out of these anti-estrogen drugs due to side effects or whatever reason, that is your right. Quality of life matters. A lot. For some, the side effects of these drugs are just not tolerable. They definitely have a dark side. You make decisions that feel right for you based on information you have or had. Having said this and based on this study and other research, it’s important to also thoughtfully consider staying the course on these meds, if your oncologists advises this. Ultimately, of course, the decision is yours.

5. We must put more effort and more dollars into research in order to better understand everything about metastatic breast cancer.

We need to learn why metastasis happens, how to stop it or at least how to slow it down when it does happen and how to prevent it in the first place. Researching metastatic disease is key to finding answers about the full spectrum of breast cancer. We need more research specific to metastasis. Lots more. Metastatic research benefits every stage.

6. Don’t panic when you read studies, of any sort. 

Yes, this one’s depressing, but your absolute risk might be somewhat (or a lot) different. Studies are just that. Studies. And like I said, deep down, you and I already knew this risk for recurrence remains, if you’re on these drugs or not. These drugs are sort of like safety nets, and we all know safety nets sometimes fail. But sometimes they work too.

7. I didn’t see mention of treatment variables. 

How many of these women in the study had mastectomies vs. lumpectomies? How many had chemo? How many had radiation? Or both? What drugs specifically, were the women on? Does it matter if it was Tamoxifen, Arimidex, Femera or Aromasin? How many were brca+? How old were they? When were they diagnosed? And what about women like me (and perhaps you), who have taken one of these meds for six years? Or seven and then opt out? How is our risk impacted?

8. If you’ve been recently diagnosed with early stage, ER+ breast cancer, find out if having the OncotypeDX test makes sense for you.

I have regrets about not pushing harder for this test. It still feels like I am missing an important piece of information. When applicable, I feel the test should be offered to early-stage breast cancer patients as part of standard protocol upon diagnosis. (I think this is coming in the new staging guidelines I mentioned, but don’t quote me on that.)

9. You must be your own best advocate. 

There’s really no choice here. You have to become an informed self-advocate. This doesn’t mean going overboard. It simply means learn what you need to in order to make decisions you can feel good about. Ask questions until you’re satisfied with the answers you get. Share about your concerns and side effects. Do not suffer in silence. Ever. If you need help managing issues, ask for it. Don’t let your issues be brushed off. If you develop symptoms you’re worried about even years after a diagnosis, get them checked out.

You are the most important one on your medical team. Speak up. Speak out. Learn. Choose wisely. Do your best and then ditch any guilt. And remember, self-advocating is a skill. You’ll get better at it. You will.

Breast cancer is a smoldering, sneaky, insidious disease that is never truly over.

Are you nodding your head in agreement? Once you hear those words, you have cancer, you can’t go back.

This particular study further confirms this reality with this conclusion:

After 5 years of adjuvant endocrine therapy, breast-cancer recurrences continued to occur steadily throughout the study period from 5 to 20 years. The risk of distant recurrence was strongly correlated with the original TN status, with risks ranging from 10 to 41%, depending on TN status and tumor grade. (blue highlighting for emphasis is mine)

Not what we like to hear, right?

My oncologist has never suggested I am cured. We stick with NED (no evidence of disease). And it seems, this is the label we’ll be sticking with for quite some time. I’ll take it.

What now? 

I have an appointment with my PCP later this month. She continues to help me pick up the pieces and will hopefully help me make my final decision about remaining on an AI. I’m leaning toward staying on for the full ten years – if my bones hold out. (Along with a few other parts).

Now I’m wondering, what about after ten years? Are these drugs going to be a “life sentence”?

I can’t think about that now.

As my oncologist wisely suggested a while back, “Nancy, just think about this in short-term intervals. We can re-evaluate every six months.”

For now, that’s my plan.

If any of this is applicable, what’s yours?

NOTE: Please always keep in mind, my blog is not intended to be interpreted in any way as medical advice. What I do or do not do, is not necessarily what you, or anyone else, should do. Every person and every situation is unique. Your decisions are yours and yours alone to make.

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If applicable, is your breast cancer hormone driven?

If not, what specific type of cancer were you diagnosed with?

Have you been on a hormone-blocking medication and if so, how has that gone for you?

You might want to read and download, Endocrine Therapy – Managing & Making Decisions About Your Aromatase Inhibitor Medication.