Are you confused about the AJCC's updated

Are You Confused About the AJCC’s Updates to the Breast Cancer Staging System?

Are you feeling confused by the recently implemented updates to the breast cancer staging system? Did you even know changes have been made? I only learned about the changes late last year, and I have been trying to figure out what the changes mean. This post is my attempt to share some of what I have learned about the changes.

Starting January of 2018, oncologists began implementing the updated system as laid out in the American Joint Committee on Cancer, Breast Cancer Staging Manual, Eighth Edition. 

I will highlight a few things I surmised upon researching some of what is presented in the manual. The information I’m sharing is by no means complete. As always, please keep in mind, this blog is never intended to be a substitute for sound medical advice. Your concerns and questions are always best addressed by your medical team.

The following are a few things I learned about the staging system revisions:

1. When staging, more focus will now be given to the DNA of a tumor itself because biology of a tumor sometimes matters more than a tumor’s size or location. This is a fairly recent and very important development.

Since 1959, most oncologists have been using the AJCC’s anatomy-based TNM staging system. This is the one most of us are familiar with. T stands for tumor, N stands for nodes and M stands for metastasis.

The revised system keeps the old TNM system, but also adds in biologic factors such as tumor grade, estrogen (ER) and progesterone (PR) receptor expression and human epidermal growth factor 2 (HER2) expression.

At first, I was confused by this because my pathology report (in 2010) included the above info, and I suspect many of you would say the same. (BTW, this is why it’s so important to have a copy of your path report. If you don’t yet have one, you can still ask for it). As I understand it, this information was not generally included prior to 2010, or was not required. It’s now required to be included in pathology reports, in the parts of the world where this is possible – which sadly, is not everywhere. This is one reason the TNM staging system will remain. It will continue to be the foundation, so to speak, enabling discussions about cancer staging to have uniformity world-wide.

2. When appropriate, genomic assays such as the Oncotype DX®, Mammaprint® and a couple others will now be more widely utilized for staging or determining treatment options.

This means some early stage ER+, lymph-node negative cancers can be down-staged. For example, if you are staged at T2N0 today and have a low Oncotype DX Test® recurrence score, your stage might be changed to stage 1.

This is a big deal as chemotherapy can be avoided for more patients without affecting survival. The data supports this.

This is a good time to mention that genetic testing and genomic testing are not the same. Genetic testing refers to testing for gene mutations such as BRCA1 and 2 (there are many others) to help determine a person’s genetic or hereditary risk for getting cancer. Genomic testing is looking at genes in a tumor and trying to figure out how they work and interact. Sometimes this can impact treatment options – targeted cancer treatment is a buzz-word phrase we hear often in those annoying (to me, anyway) cancer center TV commercials.

3. Lobular carcinoma in situ (LCIS) has been removed from the staging system as it is not considered a malignancy.

LCIS (lobular carcinoma in situ) is not the same as DCIS (ductal carcinoma in situ). LCIS is considered a risk factor, but not cancer. When both LCIS and DCIS present, the classification is DCIS or pTis (tumor in situ). DCIS is also referred to as stage 0. This hasn’t changed.

4. The new guidelines more clearly define pathologic measurement of lymph node metastasis involvement.

As I understand it, only the largest tumor in a node is used for classifying, along with the collective summary of all lymph nodes tested. Lymph nodes with ITCs  (isolated tumor cells) are counted as nodes with macrometastases or micrometastases, but ITCs alone do not contribute to N classification.

As one example, my classification was T2 N1a. I had one node with a tumor that was large enough to qualify as metastatic carcinoma along with microscopic extracapsular extension – which meant cancer had spread outside the node wall. And yes, that’s a scary thought I try not to think about too often.

I tried to interpret the numerous (there are pages of them) charts and graphs included in the new AJCC guidelines, but admittedly, got confused and frustrated. But as far as I can tell, my staging would be the same today. You can read and try to make sense of charts and graphs here.

Obviously, there is a lot more in the AJCC Manual, Eighth Edition than I shared about here. The highlights I shared are ones I feel comfortable sharing within the parameters of this blog post.

In a nutshell, the updated system assigns stage based on overall prognosis with treatment, not just tumor size.

It’s worth mentioning, when I shared an article about the revised staging system on Facebook recently, several readers asked about getting re-staged today. This is not the goal of the revisions. They are meant to enhance staging for patients being diagnosed today in order to allow for the most up-to-date and most suitable treatments.

Of course, this doesn’t mean you cannot ask your oncologist questions about your staging and if your cancer might be staged differently today. Again, as far as I can tell, mine would be staged exactly the same.

I couldn’t help but notice the new AJCC manual mentioned the Breast Cancer Index Test (BCI) as potentially being another useful tool for some women with hormone positive cancers. My insurance company recently denied a pre-authorization request for that one (to help me determine benefit of staying on an AI for an extended period). But that’s a post for another day. Let’s just say, I wasn’t happy with that denial.

As our understanding of the biology of breast cancer continues to evolve and expand, more changes and adaptations for diagnosing, staging and treating breast cancer will surely follow. This is always the goal.

Science + research = results that improve treatments and extend lives.

So while the revised staging system might seem complex and confusing (and it is, at least for some of us), the changes represent forward progress for breast cancer patients.

And this is a good thing, a very good thing indeed.

For more info click here:  American Cancer Society CA Cancer Journal: Breast Cancer – Major Changes in the AJCC 8th Edition

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Did you know about these revisions in the breast cancer staging system?

If applicable and if you’re comfortable sharing, what was your stage?

Do you have a copy of your pathology report and/or access to it online?

Featured image of infiltrating ductal carcinoma via Wikimedia commons –  original source, National Cancer Institute (NCI)

Are you confused about the AJCC's updates to the breast cancer staging system?
Click on the image to download a free copy of’s pathology report guide. Image and guide info via



18 thoughts on “Are You Confused About the AJCC’s Updates to the Breast Cancer Staging System?

  1. Nancy, Thank you for spreading the word about the AJCC changes. They are causing a lot of confusion at all levels of the healthcare system. I hope these changes, once they get the kinks worked out, will result in better outcomes for patients, better care, and fewer instances of both overtreatment and undertreatment.

    Best to you, Alene

    1. Alene, Glad to hear I’m not the only one feeling confused. Better outcomes are what we all want, so if these updates help with that, they are welcome. Thank you for commenting. Good to hear from you.

    1. Reta, When I was diagnosed, my oncologist did not want to “bother” with the Onco as I was not node negative. All oncologists did not follow that guideline and, of course, every patient, every situation is unique, as is every oncologist. On a related note, BCI test was originally intended for node negative, but now it’s offered to patients with 1-3 nodes involved as well. Regardless, these assay panels are going to be more widely used now. Which is a good thing. Thank you for the comment.

  2. Thank you so much for the update on changes! It is important for us to understand as much as we can so we can be sure to receive the best treatment. My stage was DCIS (0) when diagnosis was made via biopsy. I chose bilateral mastectomy with my family incidence of cancer. BRCA1 negative, BRCA2 unknown variant. The mammogram never showed a invasive ductal carcinoma. I was lucky to have pT1N0 or stage 1 with no chemo but on AI for 5 to 10 years. My Oncotype score was 16. As survivors, I think we all are interested in knowing recurrence chances. I have my pathology report and am fortunate to have my father as a doctor, husband as a pharmacist and my sister as a biogenesis. I feel knowledge is power and everyone needs information to make the best decision for themselves. Thank you for you blog- you are brave to share your story and continue to help others! My mission now is to let other women know that early diagnosis does not mean minimal treatment. I think we are lulled into thinking it’s early … we are good… and look stage 1 can be chemo!

    1. Lisa, You’re right, it’s important to understand as much as we can so we can make the best decisions for ourselves. You are fortunate to have such knowledgeable people around you, but we all deserve access to that knowledge. If that makes sense. I don’t consider myself brave whatsoever, but thank you for the kind words. And thank you for sharing.

  3. OMG. I am so confused. What stage was I? I can’t tell any more…. Also I did not know about these changes. But I haven’t seen my oncologist yet this year. I will make a note to ask this. I do see a blog post for me in this – An evil conspiracy to keep the patients confused so they don’t ask questions. A great post!

    1. Caroline, I don’t think there is any conspiracy to keep patients confused, but I get your point! All of us on this side of a diagnosis have to keep in mind, it’s not about our diagnoses per se. It’s more about women and men being diagnosed now and ongoing. But of course, it’s natural to want to know if your diagnosis would be different today too. I certainly checked that out. Changes in staging that result in less over-treatment as well as less under-treatment are good ones. Thank you reading and sharing. I look forward to your post. Come back and share your link, if you want to, Caroline.

  4. I think I get upstaged. I’m T1cN0M0 but Grade 3 and only ER +. That seems to add a couple danger points and my prognostic group which used to be IA is now IIA. I’m still waiting for the oncotype results but I expect chemo is in my future….

    Oddly enough I was IIA based on clinical exam but the tumor turned out smaller than 2cm so I just got used to being down staged, when I read the new guidelines and realized I’m still at IIA after all.

  5. Hi Nancy,
    I had not seen anything yet about this update to the breast cancer staging system. There’s a lot of information to integrate into treatment decisions these days. The added complexity in the system seems bound to cause some confusion, but I guess there’s a trade-off and in this case it also seems well worth working through. Thanks so much for informing us about these important developments.

  6. Nancy, my stats were very similar to yours and like you, having one node positive, I was told the Onco-type DX wasn’t necessary because I was beyond the gray area of whether to have chemo or not. I’m certain my treatment would have remained the same with the new additional guidelines. I am glad for those to come that some will be spared unnecessary chemo. This is good news.

    1. Eileen, I remember that you and I had similar diagnoses as far as node involvement and also the BRCA2+ thing. I still wish I knew my score. And I agree, this is good news. Thank you for sharing.

  7. Because of this post, I asked my new oncologist about my staging. I’m so glad I did! I was T3Nx – the x meaning that no one had thought to determine during my first lumpectomy at whether lymph nodes were involved. My new doc was not pleased with this (the old oncologist who I loved moved to a new state). Anyway, she took a lot of time explaining this to me, complete with white board drawings. The hospital’s computer systems have changed and she was going to look at the second lumpectomy reports to see if the N had been determined. I was grateful that she took time with a patient that she inherited to explain all that stuff. Bottom line, my status is not affected by this new AJCC update, but by asking I got lost of information I wasn’t aware of. Thank you!

    1. Linda, How wonderful your new doctor took extra time to explain things so well. I’m glad this post resulted in you feeling better informed. Thank you for sharing that.

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