Stage 2 or Stage 1? Exact situations hard to find examples of

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2aT2N0M0ERHER2Pos
2aT2N0M0ERHER2Pos Member Posts: 9
edited December 2020 in Stage II Breast Cancer

Hello - I was diagnosed last month. Here is current situation:


4 CM tumor, Grade 2, ER+, PR-, HER2+

Negative Lymph Nodes and No Distant Spread

based on this my clinical staging is 2a. I’m on my second AC cycle have 2 more then switch to THP then surgery and radiation and home one therapy.

My oncologist said she was happy my FISH came back HER2 positive. But I hear that is a bad thing due to aggressiveness and recurrence likelihood. So why did she want it positive? My Breast Surgeon said it would be bad if HER 2 came back positive.

Also - based on new staging criteria in 2018, I am very close to this situation (except I am Lymph Negative and PR negative (3%):

Still, if the cancer tumor measures between 2 and 5 cm and:

  • cancer is found in 1 to 3 axillary lymph nodes
  • is HER2-positive
  • estrogen-receptor-positive
  • progesterone-receptor-positive

it will likely be classified as stage I.


so, wouldn’t I be also considered Stage 1?


thanks for any insight. Glad I found this site

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2020

    Hi!

    I really wouldn't worry about stage. In fact, since you are doing chemo before surgery, you'll never really know your true stage because imaging isn't perfect. Your tumor might not be 4 centimeters, and some of your nodes could be compromised. However, if chemo clears out your active cancer, you will never know. I will never know because that happened to me.

    HER2+ breast cancer is aggressive but because it is aggressive, chemo is effective in destroying it. Also, since the development of targeted therapies like Herceptin, Perjeta, Nerlynx, and Kadycla, the outcomes for HER2+ cancer have improved significantly over the last 30 years.

    Good luck, getting through your treatment! I did the same regimen, AC + THP.

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    Sorry you've had to join us here, but glad you found us.

    Yes, HER2+ is aggressive. But as ElaineTherese mentioned, those with HER2+ cancers now have available the most effective treatments. As a result, based on the latest report that I've seen, the long-term survival rate for those with HER2+ cancers is now among the best, if not the best of all cancer subtypes.

    As for staging, as ElaineTherese said, this is not something to worry about if you will be having the appropriate treatments. That said, "close" doesn't count. Staging is very specific. There are now two methods of staging. The first is the original Anatomical TNM staging (tumor, nodes, metastasis) and the second is Prognostic Staging. It appears that your clinical diagnosis is Stage IIA using either method.

    image


    image


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  • 2aT2N0M0ERHER2Pos
    2aT2N0M0ERHER2Pos Member Posts: 9
    edited December 2020

    Thanks for the responses ElaineTherese and Beesie. Very helpful and can bring me some hope to this diagnosis. I heard from a friend with TNBC that the real stage comes after surgery similar to what you mentioned. I just get hung up on reading the 5-10 year survival percentages all over online and it seems the Her2 + ones are in the 70s. Can’t tell if that is with targeted therapies or not. But I have 3 small girls (age 5, 4 and 1) so it is alarming. I believe my genetic test is Negative for pathological variants so hoping my girls won’t automatically get breast cancer at an early age or ever. However the test looked at 41 cancer related Genes and ATM had a Varient of Unknown Significance (VUS). So I’m thinking that is suspicious since I am 37 and have this aggressive BC that is Her2 + and ki67 70%. But the generic counselor told me likely it will not be related so I can only hope my girls are clear.

    Beesie - those charts are wonderful I have been searching for the exact type of info - are you willing to share the links to the charts and also the latest report that you read about the best prognosis for Her2 positive BC these days?


    many thanks and I am so glad I found this site yesterday

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    I'm happy to share my sources, if I can find a version that I can post. I saved both a powerpoint presentation and PDF of the updated AJCC Staging but neither of those can be posted here. I will have to see if I can find the url link where those were originally located.

    As for the research, I will have to dig around to find it. I usually try to post my links but when I was replying yesterday, I just wrote what I remembered reading and didn't have time to dig out the link. I've done some quick checking and so far can't find it.

    More to come.

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    Okay, I found this very detailed article about the 2018 AJCC Breast Cancer Staging on-line. It includes the same charts that I provided but prior to that goes into great detail explaining the new staging.

    https://cancerstaging.org/references-tools/deskreferences/Documents/AJCC%208th%20Edition%20Breast%20Cancer%20Staging%20System.pdf

    Some pages you might find interesting:

    • 619 - Determination of risk profile, 620 - 5-year Disease-free-survival and Overall-survival based on stage and risk profile. This is what went into building the Prognostic Staging.
    • 625 - Anatomical Staging
    • 626 onwards - Clinical and Pathological Prognostic Staging. By comparing the Prognostic Staging of HER2+ to HER2-, you can see the positive impact of being HER2+, particularly for those who have diagnoses that have other unfavorable characteristics. Here's an example:


    image

    Hope that helps!



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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2020

    Thanks, Beesie. Another thing to remember: the use of Perjeta, Nerlynx, and Kadycla for early stage HER2+ cancer is very recent. (Herceptin has been around from the late 1990s.) When I was diagnosed in 2014, Perjeta was the new kid on the block. Nerlynx came a few years after that, and Kadycla for residual HER2+ cancer after chemo has just been approved within the last year or so. Survival rate data won't take into account these new developments for some time. So, I would consider any survival rates posted on the internet to be old and not particularly accurate with respect to HER2+ breast cancer.

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  • 2aT2N0M0ERHER2Pos
    2aT2N0M0ERHER2Pos Member Posts: 9
    edited December 2020

    Beesie - the link you sent was excellent information. I literally spent hours reading it all tonight and feel much more informed. Thank you!

    I also revisited all my results and my HER 2 was Equivocal and then FISH came back Equivocal also. My oncologist sent samples to Michael Press an expert in CA and he did all tests over. My ER was 70%, PR 3% and HER 2 moderately amplified - or positive. My doctor said since PR is borderline or low-positive she will treat it as negative. However in the reading you sent it says any staining of 1% or more is considered PR positive. So based on the chart you you posted, I think if we use PR as positive, along with T2, N0, ER+ and Her2 + then my prognostic stage is 1B, not 2A. I understand I am splitting hairs here but just looking to understand if close calls are subject to interpretation a bit and if going by strict guidelines I may be 1B?

    Many thanks!

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    The staging is something you need to discuss with your MO.

    That said, take a look at two of the pages I referenced in the above link, pages 619 and 620. From page 619, your risk profile score is 0, based on being ER+, HER2+ and Grade 2. Then on page 620 you can see that in their sample (which admittedly was quite small), the 5 year DSS is 100% for both Stage I (A or B) and Stage IIA for those with a risk profile score of 0. So it doesn't look like there is much difference for you whether you are considered Stage IIA or Stage IB.

    But, to confuse things further, the reason being considered PR- would put you into Stage IIA vs. Stage IB is because, all other things being equal, ER+/PR- cancers have worse outcomes than ER+/PR+ cancers. This does not appear to be the case with small non-aggressive ER+/PR- cancers, where the Prognostic Stage is the same whether the cancer is PR+ or PR-, but this is reflected in the Prognostic Stage for ER+/PR- cancers that are T2 and larger, or grade 3, or node positive. So with very low PR, the question is not so much whether you will get some benefit from hormone therapy (which, to my post in your other thread, you will be prescribed anyway because you are ER+), but whether a very low PR cancer behaves more like a PR- cancer and therefore confers a bit more risk than than a highly PR+ cancer.

    The good news with your diagnosis is that because you are HER2+, you benefit from extra treatments that are not available to those who are ER+/PR-/HER2-. So coming full circle, that's why your risk profile score is 0.

    Not sure if any of that is helpful or not.


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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    To add to my previous post, you might find this interesting, relative to the impact of being HER2+:

    Factors that predict recurrence later than 5 years after initial treatment in operable breast cancer


    Take a look at the difference between the "ER or PR positive and HER2 negative" recurrence pattern (the blue line), and the "ER or PR positive and HER2 positive" recurrence pattern (the green line). Importantly, this chart does not indicate the percent of recurrences but just the time line for recurrences. However it is significant in that the HER2+ recurrences pretty much top out at 70 months whereas the risk from ER+/HER2- cancers continues through to month 250. Another reason why HER2+ can be seen as being favorable.

    image

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  • 2aT2N0M0ERHER2Pos
    2aT2N0M0ERHER2Pos Member Posts: 9
    edited December 2020

    this is great information - you have all the knowledge! I've been reading More studies and have seen some 10-15 years ago that suggest HeR2 + is a prognostic factor only in stage 3, but in early stages outcomes can be better than negative. Some of these may not have considered Herceptin.

    Also in reading more about the Risk Profiles and staging (50 page link you sent) - it states that patients received neoadjuvant therapy are still staged the traditional way with TNM and whether treatment had no, partial or complete response. Although they think risk profiles on bio markers such as Her2 and ER PR staging conventions may be released soon for the neoadjuvant groups. Therefore I believe my personal case would stick to my MOs presurgery stage of 2a for now but then wait to see what the post surgery staging is officially. Good news is I notice some shrinkage after my 2 AC doses. Next one is next Thursday. Tumor used to protrude in 2 visible mounds just under the skin, now while the tumor is still there by touch, it is not protruding or visible unless you find it and squeeze - hoping it shrinks to at least below 2 cm after chemo and Herceptin for a better surgical outcome. First ultrasound said 5.9 cm but later ones showed 4.8 MRI showed 3.4 Vary wide rang but I think the 4.8 US is the accurate measure because it was the US done after pathology came back malignant

    Do we know how the MO stages after surgery and which staging is more important.

    I feel like you are the expert

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    No, I'm definitely not an expert on this stuff. I just like to dig around research and I've been hanging around here for a while, so there are some topics where I'm reasonably aware of good information sources. I tend to be most familiar with topics that I read up on related to my own diagnosis and treatment. It happens that my diagnosis was ER+/PR-/HER2- so I've read quite a bit about PR-.

    I can't help much with your question about staging post surgery for someone who's had neoadjuvant chemo. I never had chemo so I'm way out of my depth once the discussion goes there. From reading this board, my understanding is that for those who have neoadjuvant chemo, this is the one situation where Clinical Staging is considered more reliable than Pathological Staging, and that often Pathological Staging isn't even done. But I'm really not sure at all about that. Lots of people on this site have had neoadjuvant chemo, so you might want to do a search to see if you can find the answer, or post a question in the Chemo forum, asking specifically about staging for those who have neoadjuvant chemo.

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  • moth
    moth Member Posts: 4,800
    edited December 2020

    I'm not convinced that it really matters at the end of the day. I was diagnosed in Dec 2017; in Jan the staging guidelines changed and I would have had a different stage a month later. It really is only useful for treatment plans and you've already got that.

    Is it recurrence risk that you're interested in? I spent way more time on Predict and Lifemath than on looking at staging.

    Hope you keep having great response to your chemo!

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2020

    RE: post-surgical staging -- there may be nothing left to stage after chemo, which is what happened to me. So, some of us don't get staged, post-surgery. Hopefully, that will happen for you, too. Instead of obsessing about staging, you may want to try Predict, as Moth suggests. Note that it doesn't ask you for your stage! Remember to insert your tumor size in mm, so 48 instead of 4.8. Also, you're getting 3rd generation chemo, and make sure to note that you're getting Herceptin.

    https://breast.predict.nhs.uk/


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  • 2aT2N0M0ERHER2Pos
    2aT2N0M0ERHER2Pos Member Posts: 9
    edited December 2020

    thanks all for the details - I just used Predict and was wondering why there wasn't a tool like that out there. I was not sure what to put about how cancer was found - Symptoms or Screening? I saw a bump and went to OB. Never had other symptoms. Funny how we get reduced to percentages and I'm not very confident in their accuracy. I got diagnosed last month and my friend was diagnosed 2 months prior - both of us 37 and she is triple negative and has the BRCA mutation. I feel like it is more the luck of the draw with this disease she also had liver metastasis at time of diagnosis. We have become chemo sisters as she is close by and take walks together when the weather permits. She also has young kids and is going to remove both breasts and ovaries proactively. We were happy that her 2 cm tumor completely disappeared after 1 chemo session. So we think she will beat the percentages

    I likely will post 2 more thread - first on the chemo and staging post neoadjuvant treatment. I am not so confident my tumor will disappear it is still sizeable after 2 AC just not protruding visibly outward

    second, because I have 3 young girls I'd like to post a thread on my gene test. Was happy don't have a pathological Varient for 41 cancer related genes. But there is always a hook and I have a Varient of unknown significance on my ATM gene - they don't know if this causes any issue for my kids or not as there isn't enough research on this specific mutation The ATM cancer mutation does increase chances 20-60% for cancer but I don't have that known mutation. Being 37 and having a large aggressive Her2 positive tumor seemingly out of nowhere makes me highly concerned for my 3 girls future - I don't have any other family history for breast cancer.They will get early screening anyways but maybe 20- 25 years from now there will be better options!


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  • moth
    moth Member Posts: 4,800
    edited December 2020

    The recurrence prediction calculators are always a few years behind as they're based on large pooled data sets, and outcomes are usually a bit better.

    Reality for the individual is binary. We either recur or not, and if yes, it's local or not. Percentages, risk odds etc apply to large numbers, not the individual.

    Your stage 4 friend is welcome to join us on the metastatic subforums. There are a number of de novo peeps there, and we have a pretty active stage 4 tn group.

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