Skip to Content

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…

Get more articles from Nancy’s Point in your inbox once a week. Click Here.

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.

Sign up for weekly updates from Nancy’s Point!

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.

Aromatase inhibitors, the drugs we love to hate.

Aromatase inhibitors, the drugs we love to hate. And we can’t forget their “cousin,” tamoxifen.

 

 

Yvonne

Thursday 3rd of October 2019

I would like to read the comments by Professor Blaustein does anyone have a link? The one posted by Anais no longer goes to his comments. Thank you.

Eva

Wednesday 25th of September 2019

My cancer is/was T1N0. I had a lumpectomy exactly 1 year ago. I had the Oncotype DX test and was given radiation but not chemotherapy. I was prescribed Anastrozole for 5 years. I stopped taking it after 6 weeks. The side effects were horrendous and I'm no wimp. I was a firefighter for 23 years. Before the diagnosis I was maintaining 2 1/2 acres and an old house by myself. I am 59 years old. It has taken me 6 months to get back to feeling "normal". This is so hard. I wonder whether a double mastectomy would have made more sense. They offered it. At the time I had confidence in the drug and had no idea how awful it is. I was told the hot flashes would come back (I'd been on HRT for 7 years) and I might experience dizziness so I should take it at night. A month in I couldn't get out of bed and when I did I hurt too much to make the bed. I went to stay with my nearly 80 year old parents because I felt like I couldn't do anything for myself and I was scared. I finally figured out it was the drug and stopped it. It's so hard to know what to do. I want to be alive to help my parents when they need me and I'm afraid the cancer will come back. However, I don't know how anybody functions on this drug. I've gone vegan. I'm taking all the hoodoo voodoo adaptogens. I've gained 40 lbs and I'm trying to lose it. Emotionally, I'm still a mess. I haven't followed up with my doctor. I'm an adult woman that's afraid to tell him I stopped the med and I'm afraid he will put me on another one that is no better. I don't have a husband or children or grandchildren so I have to decide what to do based on my aging parents and my own quality of life. I feel like I'm flying by the seat of my pants.

Cathy Donahue

Wednesday 14th of February 2018

I was diagnosed in October 2016. Had a lumpectomy, radiation and have been on Anastrazole since August or September of 2017. I am thirsty all afternoon and evening and my hair is wispy thin. But I have a 13 year old. I'll suck it up and do the drugs so I can be here for him. 10 more years of this crap. Yuck. And I'm really tired of people telling me how "cute" my hair is. I hate, hate, hate it.

Kristyn

Sunday 17th of December 2017

Hello..I was diagnosed on my birthday this year...yay. I had a unilateral mastectomy. Tumor was stage 1A Grade 2 onco type score was 19. I am told likelihood of recurrences is low. I have been on Anastrozole for approx 1 month. I had multiple surgeries due to breast expander infections. This drug is making me miserable. I had both knees replaced due to arthritis of the knees. Since being on this drug, I feel like they were never replaced. They HURT. My feet hurt, my wrist hurts, I can't sleep. I am going to talk to my oncologist...if my recurrence rate is supposedly low, can I just not take these pills? I am 57 and I was told I would be taking this for 10 years.

Nancy

Tuesday 19th of December 2017

Kristyn, Cripes, what a birthday present. Ugh. I'm sorry you're dealing with all this. Definitely have a frank discussion with your oncologist. You need and deserve validation and help in managing side effects. My best to you.

Beth Gainer

Monday 27th of November 2017

Hi Nancy,

As you know, I had to be taken off AIs due to quality-of-life issues. I don't know what to think about the new guidelines. I wonder if I'm now at more of a risk of recurrence for not continuing them. Then, and I know this sounds paranoid, I wonder if Big Pharma is behind extending the number of years people need to take the meds. Who knows? Thank you for providing such an educational post on an important topic.

%d bloggers like this: