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Will 30% of Early Stage (1-IIIA) go on to metastasize??

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  • chisandy
    chisandy Member Posts: 11,408
    edited March 2016

    Remember, even “early stage" is a catchall term, even excluding DCIS (Stage 0). Stage I tumors can range from millimeters to 2 cm. Stage II can range from one to several local lymph nodes. “Early stage" tumor profiles vary widely--from Luminal A to Luminal B (ER+/PR-, hormone-neg HER2+, triple positive) to basal-like or triple-neg; from Grade 1 to Grade 3; from IDC to ILC to IBC; to mucinous to tubular to solid to cribiform to papillary. Yet as long as it hasn't spread beyond the local nodes, it's classified as “early stage," despite varying prognoses based on tumor profile, size and nodal involvement--not to mention varying treatment protocols.

    Using my support group last night as a “mini-universe" (as they say in stats-speak), out of 10 of us present only one was Stage IV--and that was her initial dx. And the other 9 of us were anywhere from IA to IIIB at initial dx.

    Until I read a confirmed statistic that 30% of std-of-care-treated node-negative Luminal A cancers go on to Stage IV before well into old age, I'm not gonna drive myself crazy with worry but instead try my best to reduce risk factors--and live my life to the fullest extent my resources will allow, since at 65 the clock is ticking! Remember, the biggest killer of postmenopausal women is still heart disease, regardless of whether they also have cancer. (Women are likelier than men to die of their first heart attack).

  • BarredOwl
    BarredOwl Member Posts: 261
    edited March 2016

    Hi MrsM:

    I should emphasize that the ACS study does not answer your question clearly due to use of the phrase "localized disease at diagnosis". EnglishMummy's question highlighted the language problem.

    Here again is the link to the general information page from SEER:

    http://seer.cancer.gov/statfacts/html/breast.html

    If you open the tab entitled "Survival Statistics", you can see a breakdown of percent of cases by stage:

    • Localized (61%)
      Confined to Primary Site
    • Regional (32%)
      Spread to Regional Lymph Nodes
    • Distant (6%)
      Cancer Has Metastasized
    • Unknown (2%)
      Unstaged


    The text also states: "localized (sometimes referred to as stage 1)." (It is not clear if this definition is the same as the one used in the ACS study.)

    I said above that "they [ACS researchers] determined that in a specific four-year period, 28% of those who died had "localized disease at diagnosis" (meaning 72% of those who died in the period did not have localized disease at diagnosis)."

    But what was the initial diagnosis of those 72% who did not have "localized disease"? The Medscape article did not provide any information on that. Considering the reliance on the SEER database and its usage, it is possible that the 72% includes those both (a) those initially diagnosed with "regional" disease; and (b) those initially diagnosed with "distant" metastasis.

    Unfortunately, with no scientific publication of the ACS study and its methodology, the above is just speculation on my part.

    BarredOwl

  • minustwo
    minustwo Member Posts: 13,264
    edited March 2016

    Wow - Barred Owl. A wealth of information that I'll have to review later.

    Barbe - my original diagnosis was DCIS. But with the recurrence when I began discussions with my MO about various chemo & radidation treatments (no hormones since I'm ER/PR -), that's when he said the same phrase " Let's save the big guns..." Of course he also said "just in case". So in spite of the fact that I moved ahead with my life - "fat, dumb & happy" after the first rounds of surgery, I'm having a more difficult time putting it behind me the 2nd time.

    Thanks to everyone who is contributing to this thread. Such great knowledge & experience.

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited March 2016

    ((((Hugs)))) Minus.....

  • minustwo
    minustwo Member Posts: 13,264
    edited March 2016

    Barbe - back at ya. Watching with bated breath & hoping your tests will be positive. Opps - positive would be growth. So hoping your tests will be negative & the results negative.

  • mel147
    mel147 Member Posts: 291
    edited March 2016

    Iago and Barbe -

    I'm another Stage 1a who was told no tamoxifen. I only had surgery and, on the one hand, I'm happy about that, on the other hand, I do wonder what the future holds. I guess no one knows!

  • lago
    lago Member Posts: 11,653
    edited March 2016

    ChiSandy, stage II can also be no nodes and tumor over 5cm. I know this because that's me.

    MinusTwo the actual term the MDs use, believe it or not is "unremarkable"

  • lago
    lago Member Posts: 11,653
    edited March 2016

    Mel147 if you are concerned go get a 2nd opinion. You can always start now if your 2nd opinion things you should be on it.

  • mel147
    mel147 Member Posts: 291
    edited March 2016

    I have thought about the second opinion and realized I am sure I could find someone else who may say to take it but would that really mean I need it? Nobody knows the answer to that. Because I have had trouble taking various types of hormones in the past I'm trusting this is the right thing for me, but, having said that I also realize I don't know the future and one day I may find out it was wrong.

  • doxie
    doxie Member Posts: 700
    edited March 2016

    mel147,

    Aromatase inhibitors are not hormones. The are anti hormonal in that they stop the production of estrogen. Tamoxifen is different, though could cause problems because of its effect on the uterus.

    I think if my risk of distant recurrence was 1-2% as indicated by the Onco DX and/ or I was prone to blood clots or uterine cancer (tamoxifen SE), and/ or had moderate to severe osteoporosis and could not take bone density building meds (Aromatase inhibitors SE), I could expect that an MO might advise me to not take these drugs if two out of three of these applied.

    Otherwise, if you haven't been prescribed one of these, I'd strongly suggest a second opinion. I can't imagine a problem with starting any time after TX.

    Edited to add that this post refers to ER+ BC, not TN or only HER2+.


  • cp418
    cp418 Member Posts: 359
    edited March 2016

    http://www.breastcancer.org/treatment/hormonal

    mel47 - see this link for more information about Tamoxifen and AIs. 2nd opinion in always a good thing.

  • labelle
    labelle Member Posts: 134
    edited March 2016

    mel, my oncologist told me if not for my positive node she would not have recommended tamoxifen or an AI for me. Of course, the type of BC I had is considered pretty indolent-so perhaps there is something in the make-up of your tumor that has made your oncologist believe you will be fine w/out additional treatments. Not everyone who is er+/pr+ is offered these drugs, although the vast majority are. As others wrote a second opinion can be very valuable.

  • Artista928
    Artista928 Member Posts: 1,458
    edited March 2016

    I agree about the second opinion. I don't see why not get one. You don't want to risk it and maybe kick yourself later if God forbid it's back or mets. My second cousin is IDC stage I ER+ with no node involvement and is on Tamoxifen.

  • mel147
    mel147 Member Posts: 291
    edited March 2016

    Thanks for all advice. You all make good sense. I actually see my breast surgeon on the 18th for my annual follow up and I am going to ask what he thinks and if he has a suggestion for a second opinion. I will be curious to hear what he says

  • Artista928
    Artista928 Member Posts: 1,458
    edited March 2016

    Regardless of what he says, I'd ask another MO for a second opinion. Not all bs know the details that an MO does. This is an important issue and you should leave the chances to the roll of a dice. See out the best in the know of these ER+ meds, and no one knows better than a good MO. Good luck.

  • lago
    lago Member Posts: 11,653
    edited March 2016

    I agree with Artista. Also if the BS may even defer to the MO. It really isn't his/her call.

    My BS is great but he pretty much said I was going to get radiation due to my tumor size. Actually I was in a gray area and the radiation onc gave me a pass.

  • bevin
    bevin Member Posts: 519
    edited March 2016

    ChiSandy- stage 2, can also be zero lymph nodes..

  • lago
    lago Member Posts: 11,653
    edited March 2016

    Bevin I'm stage IIB and still have no nodes.

  • bevin
    bevin Member Posts: 519
    edited March 2016

    HI Lago, yes that is what I wrote.. you can be stage two with zero nodes impacted (negative nodes). That's what I am too.

    Another posted above stated stage two was for lymph node positive and that is incorrect. I was just trying to clarify that that was incorrect information.

  • chisandy
    chisandy Member Posts: 11,408
    edited March 2016

    Yup--a tumor can be stage II either because of lymph node involvement or tumor size. Histology, hormone/HER2 profile, and Oncotype DX are often more probative. But the point I was trying to make was that the terms “early stage,” “Stage I” or even “local involvement” can encompass a wide variety of tumor profiles, with varying prognoses; that alleged “28%” of “early stage” patients could have had less favorable tumor characteristics than other “early-stagers,” even those first dx’ed as “stage IA.”

    Again, I’m not going to start biting my nails until I hear a similarly dire statistic about Stage IA patients with Luminal A tumors--and even then I will first investigate the semantics of the statement and read the specifics of the universe size, methodology, and other variables . Remember, too, that “30% of Stage IV patients started with an initial Stage I diagnosis” is NOT the same thing as “30% of Stage I patients go on to Stage IV.” Here’s an analogy: "all heroin addicts smoked marijuana” doesn’t mean “all or even most marijuana smokers will use heroin,” any more than “all alcoholics started out having an occasional drink or two” means “everyone or even most people who have a drink or two will become addicted to alcohol.”

    Statistics can be as much about semantics as they can about numbers!

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited March 2016

    Well put, Sandy!! Good analogies to think about.

  • Momine
    Momine Member Posts: 2,845
    edited March 2016

    I had followed this topic years ago, and that is why I had contacted Dr. Mohamed. Regardless of what Dr. Mohamed said, a new study recently estimated the recurrence/death rate for BC to be ~28%, i.e. very close to the 30% often quoted. It has to be kept in mind that reliable stats are not kept on this. The 28% rate of the recent study was inferred using various methods and data.

    Also, the "conditional survival" for BC is totally flat. What this means is that the risk of recurrence, whatever it is for your specific DX, stays with you for life. There is no magic survival milestone at which the risk goes down. On the other hand, if your initial risk is low, it remains low. At stage 1, you are ultimately at much lower risk than someone with an initial stage 3 DX, so I don't think it is accurate to say that stage 1 has a 30% recurrence rate. A recent study showed a 20-yr death risk of 3.3% for DCIS patients. 3.3 is not 30. The 30% is average across the early stages.* So, if DCIS has a 3.3% risk of BC death, then you can quickly work out that the stage 3 patient has a risk far higher than 30%.

    Apart from the variation depending on initial stage, the stat also tells us nothing about when death occurs relative to the original breast cancer DX. If I have a recurrence at age 87, and end up dying of BC at 88, then, yeah, it sucks obviously, but it also tends to suck to live past 100. This study shows that survival is improving for all stages. To me, this means that even if it kills me in the end, improved treatment means that I will live longer and better before it kills me.

    The main thing the recurrence rate does tell us, IMO, is that we need that blasted cure and that no amount of mammos and "early detection" and all the rest will do us much good if we don't find a treatment that genuinely stops this stupid disease.

    * After a chat with another BCorg regular, I should make clear that DCIS is not usually counted in these particular stats. However, the low death rate from DCIS gives an indication of the differences in death risk between stages.

  • divinemrsm
    divinemrsm Member Posts: 6,560
    edited March 2016

    Momine, well written post

  • summerangel
    summerangel Member Posts: 182
    edited March 2016

    Here's an interesting statistic from a recently published study of 300 women with initially diagnosed T1 or T2, N0 or N1 BC: After 15 years, 37 (12%) experienced distant metastases. (http://www.medscape.com/viewarticle/860176?src=wnl...)

    Obviously this wasn't a huge sample size, but they followed these women for 15 years and this is an encouraging statistic for those of us who fall into these categories.

  • bevin
    bevin Member Posts: 519
    edited March 2016

    This was an interesting article . Thanks for sharing. So dumb math question.. to calculate the ratio then, you simply divide the total neutrophil cells by the lymphocyte cells.? I'm embarrassed to be even asking the math :)

    So for example if neutrophil is 4220 and lymphocyte is 1660. 4220/1660 = 2.5?


  • SusansGarden
    SusansGarden Member Posts: 754
    edited March 2016

    "The main thing the recurrence rate does tell us, IMO, is that we need that blasted cure and that no amount of mammos and "early detection" and all the rest will do us much good if we don't find a treatment that genuinely stops this stupid disease."

    Exactly Momine. After starting this thread a couple years ago (can't believe it's been that long!) I pretty much feel the same. None of this information changes anything for me. I did the best treatment with the information that I had at the time. But I still think there is a misconception that if you get your mammos every year, you'll be fine. You will have caught it early and will be cured! (It also bugs me that most people I talk to think no family history puts you in the clear too. They are always surprised to hear that 87% of woman diagnosed with BC have no family history). I feel this misinformation diminishes the importance of continuing the research/funding for curing metastatic breast cancer.

  • bevin
    bevin Member Posts: 519
    edited March 2016

    SusansGarden- I agree with you and experienced the same- when I tell people its actually the smaller percent of people who are diagnosed where its a hereditary issue they're completely surprised. The advertising is slanted the wrong way. Recently here where I live the commercials for a major cancer treatment center are stating majority of breast cancer are in people with no known history or genetic component.. I was glad to see the information being shared is beginning to change and proper facts are being shared .

  • Momine
    Momine Member Posts: 2,845
    edited March 2016

    Susansgarden, definitely and we completely agree. I remember being shocked at the recurrence rates, because thanks to the propaganda, I had this idea that BC was curable and not that big a deal.

    Bevin, about the NLR, yes that is it. Divide N by L and you have your ratio. This ratio is important in other cancers as well. Apparently it is related to inflammation. I just checked my own, btw. Mine hovers between 1.6 and 2.something. At DX, it was above 2, not by a lot, but above, thus putting me in the "high NLR" group apparently. I am still here.

  • Molly50
    Molly50 Member Posts: 3,008
    edited March 2016

    I realize this isn't perfect but if my Neutrophil is 4200 and Lymphocyte is 800 does that sound right? I looked at the article and it said radiation can cause Lymphocytes to be low? Prior to sx and rads my #'s were 3000 and 1500. All of my results say within normal range.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited March 2016

    What an interesting topic, and something I hadn't run into until very recently. Here's what I found in one study:

    "Overall 9427 subjects are included in this study. The average value of neutrophils is 4.3k cells/mL, of lymphocytes 2.1k cells/mL; the average NLR is 2.15."

    Molly50, I'm not sure why your neutrophils and lymphocytes would be written this way. Translating, your neutrophils would be 4.2k--would that make your lymphocytes 0.8K? The division here would give your NLR as 5.25, which seems way off.

    Also--since the time I was diagnosed in October 2011 I've had at least an uber-zillion labs drawn, so I went back and calculated a few of the ratios. There's quite a range from diagnosis to present day. Which number is used? Before diagnosis? After diagnosis but before treatment? Or is there value in tracking and trending the ratio--it goes down, whew, it goes up, crap?

    This technique seems so simplistic--can it be truly accurate and predictive of long-term survival?