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If 93% survival rate at 5 yrs - why do the 7% perish?

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rleepac
rleepac Member Posts: 193
edited August 2018 in Stage II Breast Cancer

Just curious because everyone keeps telling me there is a roughly 93% success rate for my stage (IIb) and that makes me very happy to hear! But I'm just curious what happens to the other 7%? Do they bump up to a higher stage? Do they have complications from surgery or chemo? Do they opt out of some treatment?

Any thought?

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Comments

  • meow13
    meow13 Member Posts: 1,363
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    I am thinking a small percent even though the cancer was discovered early it either doesn't respond to treatment or was aggressive enough to attack a major organ and cause death. Either that or the stage was really 4 and went undetected until it was too late.

  • Beachbum1023
    Beachbum1023 Member Posts: 364
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    I have noticed that the numbers don't always add up either. Some are staged at 4 after surgery, some don't complete treatment for various reasons, and some die from another reason such as a car accident or heart attack. Just because they do have BC, other things can happen at any time.

  • rebzamy
    rebzamy Member Posts: 49
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    I know somebody who had a 98% chance of survival and she had hormonal breast cancer and was on Letrozole for 5 years. She came off them and 2 years later was diagnosed with metastatic breast cancer, which probably meant that she was possibly stage 4 from the start but that the Letrozole was holding it in check until she came off it. So, some of the 93% go on to develop secondaries - that's what I think I understand the question to be.

  • 2timer
    2timer Member Posts: 22
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    I personally feel that it's a 50% rate for every individual BC patient: you will either go to stage iv or you won't. I know that sounds simpleminded, but from my personal experience being someone with a less than %4 chance of getting BC after DCIS, that is what works for me. Some people have low grade small tumors and end up going to stage iv and some have large, agressive tumors with nodes and never deal with BC again after treatment. I'd feel differently if the medical community could pinpoint who the %7 is going to be but they can't. One is either on the right or wrong side of the statistics.

  • JohnSmith
    JohnSmith Member Posts: 61
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    To simply answer your question, the 7% experience metastatic progression (some might call it "distant" recurrence). Being "Stage 2" is too broad of a statement to make any conclusions though. It may very well be 7%. There are so many variables and different subtypes. It's best to determine the specifics of your tumor characteristics from FINAL pathology and use that data to draw comparisons, which is challenging due to the genomic variations science continues to uncover.
    Based on my very simplistic and crude research, I get the feeling that the number is higher than 7%. Perhaps as high as 20% progress from Stage 2 to Stage 4. (Essentially, 2 out of 10). Successful surgery removes the tumor, but the medical community is still trying to figure out why some metastasize, while others don't. You need to understand the complicated steps of cell metastasis, how it spreads, etc. (Local invasion, intravasation, circulation via bloodstream, extravasation, proliferation, angiogenesis, etc). There are a number of companies trying to answer this question and building diagnostic tests that will determine who will progress and who won't. I have no idea when these will be clinically available, nor how accurate they will be. You also need to understand drug resistance and why it happens. There's a litany of other things beyond my understanding that deals with metastatic progression.
    Some of the good news is that those that do progress continue to live long lives, due the advancements in medicine, making positive lifestyle changes, etc.
    It's an interesting question that probably most folks here have strong thoughts and opinions on. I will add this to "My Favorite Topics", since I'm always curious to hear other viewpoints.

  • shelleym1
    shelleym1 Member Posts: 111
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    I assume that 7% became metastatic within the 5 years and passed away from it within that time frame.

  • susan_02143
    susan_02143 Member Posts: 2,394
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    I am part of that 7%, but since I was grade 1, I am actually part of a 3%. To be blunt, we progress, and we get treatment, and the end game is not pretty. It might suck, but I live it every day. Enjoy your 93% as long as you can. The odds are in your favor. Live like you might progress. Make every day have meaning. Celebrate that you are well. Try to live and not worry about statistics. Find things that give you joy.

    *susan*

  • rleepac
    rleepac Member Posts: 193
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    Thank you! All excellent points and pretty much what I figured. I was thinking it was either improper staging from the beginning or perhaps they didn't do asaggressive treatment up front because it was considered 'low risk of recurrence'. I guess only God knows when our time is up and I'll just be optimistic that I will be one of the 93% for now.

    Cancer sucks

  • lauriesh
    lauriesh Member Posts: 82
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    It is also imp to remember that this is only a 5 year statistic. I was diagnosed stage 2 and at the 5 year mark, I would have been in the 93%.

    A few months later, I was diagnosed with liver mets. So, the % of recurrence could be higher than 7 %, as some women recur after 5 years and many women who recur are still alive at the 5 year mark.


    Laurie
  • Mommato3
    Mommato3 Member Posts: 468
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    Cancer is a crap shoot. Just because someone has a recurrence doesn't mean they weren't aggressive with treatment. I have seen many on this board that did a BMX, chemo, rads, and hormone therapy and it still comes back. researchers are still trying to figure out why some metastasize and others don't. Cancer cells can also go dormant and then wake up down the road. I will agree though...cancer does suck

  • DiveCat
    DiveCat Member Posts: 290
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    As Mommato3 said, cancer is a crap shoot. People don't die from breast cancer that remains in the breast (though yes, they may have complications from treatment). People die of breast cancer after it has metastatised to other parts of the body; typically with breast cancer that is most commonly to the bones, liver, lungs and brain but that is not a rule - mets can occur elsewhere. Even though it is in other parts of the body, it is still considered, and treated as, breast cancer because the cells are still breast cancer cells. Someone can have very aggressive treatment off the bat at original diagnos, and still have a recurrence. Others may opt out of recommended treatments after surgery, like AIs, and never have a recurrence. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer, though "early stage" does include everyone from Stage I to Stage III; so this is an average.

    My mother was a Stage III andso began with a different prognosis than you, but she did every single treatment offered and available to her - chemo, BMX, radiation, Tamoxifen for 5 years, then an AI for 3 more years...she was diagnosed with metastic recurrence while on that AI. She is, "stats wise" considered a 5 year survivor.. At this point, she has bone mets only and has had a good response to radiation and an AI, so she will (hopefully) still be a "10 year survivor" too, but there is an end and that stat will not be counted in the way we currently collect data on metastatic recurrence and survival rates.This is an issue, as many metastatic stats are just not counted at all; which leads to not only misunderstanding of metastatic breast cancer, but problems with funding for metastatic breast cancer research, etc. For example, NCIdatabases record when a person is diagnosed with breast cancer and when a person dies. It does not record a metastatic recurrence for someone who had early stage breast cancer. The databases only collect info for those with an initial Stage IV diagnosis, which represents only a small portion of metastatic breast cancer. My mother has some friends who were diagnosed with metastatic recurrence 15, 16 years out, long after they usually stop "counting" as well. The survival rates I see usually only go 5-10 years out.Even how long someone survives after metastatic reccurence varies depending on where it has metastasized, how it responds to treatments, or does not respond, and so on. Some may live many years after a metastic recurrence, some may live a very short time. There just is no certainty.

    A point to note: if you are diagnosed with a metastatic recurrence later, after your original diagnosis, you don't "bump up" to a higher stage, you are not "reclassified" to Stage IV, though on these forums women will often note they are Stage IV for the purposes of their signature and because that seems to be the common language of understanding. Your diagnosis is still considered your original diagnosis plus recurrence/mets (i.e. Stage II with recurrence to bones). Only about 5-10% are diagnosed at their original diagnosis with metastatic breast cancer and are thus "truly" Stage IV, the remainder are diagnosed with mets weeks, months, years, later.


    Anyway, I have always liked this little xkcd comic and thought it was relevant to this topic; it obviously does not break it down into stages and specific prognosis' but the message I think is accurate (I included link in case it is too small to read:

    image


    http://xkcd.com/931/

  • Megan2
    Megan2 Member Posts: 2
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    there is so much that is yet to be understood. There is a research centre in Colorado focused on young women's breast cancer that has demonstrated a post partum diagnosis leads to different statistics than a group with the same stage, tumor biology but no kids or kids born more than five years before the diagnosis. The changes in the breast postpartum are thought to be driving distant recurrence at far higher rates. If you look just at the stage, this would give a very different picture. I have also read that each type of breast cancer (hormone positive, triple negative, her2) recurs with different patterns and timelines, so five years is really a random and uninformed marking point. May science move forward to the point where it is 100% for everyone, all ages, stages and biology.

  • thinkingpositive
    thinkingpositive Member Posts: 564
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    How does one know if cancer has metastasized to other parts of the body? Some have only had the original MRI prior to mastectomy. I had no scans and when I asked my oncologist said that it would be too early for anything to show up on scans...or alot of false positives... and they do not do scans afterwards (as in my case mastectomy followed by chemo) unless there is a complaint of pain for a while. Doesn't this mean that it can be too late by the time that they decide to do a scan. Are there other ways that they monitor, do blood tests reveal anything that they do every some many weeks, months that would lead them to believe the cancer is still there or has spread??

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    thinking....researchers are working on better blood tests that will serve as markers that will identify metastatic disease BEFORE imaging or symptoms can identify it. One group of researchers at Sloan Kettering have identified a marker which can identify a progression of metatastic disease before imaging or symptoms identifies it. This info is EXTREMELY important for patients and clinicians because treatment could be changed more quickly.



    With respect to the other 7% ....keep in mind... If you look at insurance charts, as we age, our percentage of dying from other causes goes up as well. So while you may have a 7% of dying in the next 5-10 years of breast cancer, you might have an overall greater chance of dying from something else. The only thing I think these statistics are good for is to make treatment decisions. Hence, deciding how aggressive one needs to be with treatment. One day soon, those statistics will become moot because genomic identification will usurp statistics. That is, once you are diagnosed, using genetic info, you will know how responsive treatment will be for your type of cancer.

  • youngturknyc
    youngturknyc Member Posts: 115
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    I would like to make a quick point on this.  93% rate of survival within 5 years means that if a patient dies at 5 years and 1 month after diagnosis, that person would have still been counted in the 93% that survived within that 5-year timeframe.  Approximately 30% of certain early stagers (Stage I through Stage II) progress to Stage IV over a longer time horizon (such as 10 to 20 years).  My mom progressed from Stage Ia to Stage IV in 8 years (although she has been living with Stage IV for 14 years now).  I only wanted to make this point because many people do not choose aggressive treatment because they misunderstand what that 93% (or 100% in the case of stage 0 and stage 1 cancers) means.  Many patients also do not understand what metastasis/recurrence means, and think metastasis/recurrence can only occur in the breast area, or think that Stage IV metastatic cancer can be completely cured.  Doctors generally do not do a good job explaining anything regarding metastasis/recurrence or why treatment is important.  This results in patients in worrying about side effects of treatment a lot more than the consequences of no treatment or reduced treatment.  Just my 2 cents.

    Edited to correct typo.

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    "Converting a Killer to a Chronic Disease

    Medscape: Where are we heading in future treatments for metastatic disease?

    Dr Swain: One of the more interesting concepts, and one that is getting a lot of attention, is looking at the circulating DNA and doing what we call liquid biopsies. There are noninvasive blood tests that detect circulating tumor cells and fragments of tumor DNA that are shed into the blood from the primary tumor and from metastatic sites.[15] They can be used for diagnosis, response to treatment, and prognosis and are much easier for the patient than having to undergo repeated scans or invasive tissue biopsies. In the future, liquid biopsies could be very useful in monitoring tumor changes in real time and could help guide cancer treatment decisions.

    In metastatic disease, we do recommend that biopsies be done more frequently because the tumor can change, and that's where the liquid biopsy may be more helpful. A patient's tumor can have a change in the mutation, for example. It can sometimes be very difficult or impossible to do a biopsy at some sites, such as if the cancer has metastasized to the bone."


    Xxxxxxxxxxxxxxxx........


    Some researchers refer to blood as "liquid gold.". I like that term! We are learning so much aboutblood....

  • Lucy55
    Lucy55 Member Posts: 2,703
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    Youngturkny.. Sorry that your Mum progressed to stage 1V.. But wonderful she has been living with it for 14 years.. Was she er /pr positive ? Makes me think staying on hormone trearment for 10 years probably is a good idea.

    When you say 30 % of stage 1 and 2 progress to stage 4.. Do you mean of the 2 groups combined, or of each stage do.?

    Voraciousreader.. I appreciate your knowledge in other posts I've read too.. Do you have any thoughts on my question?

  • youngturknyc
    youngturknyc Member Posts: 115
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    Yes Lucy55 - my mom was ER/PR positive.

    30% of the two groups combined - so presumably, a lower percentage of Stage I would progress compared with Stage II (and it would average out to 30% of the groups combined).

    Ipek

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    lucy...young is correct...usually "early stage" is a combo of Stages 1 and 2. That is why I believe the statistics will one day take a back seat to genomics... My cousin and I were both staged at Stage 1. However, I have pure mucinous that rarely metastizes and she has HER 2 positive and ER/PR negative. Her treatment was way more aggressive. Are her chances now of 5-10 year survival the same as mine because we were both Stage 1? Perhaps, thanks to her aggressive treatment. I just will reiterate that I think those survival statistics with respect to stage are only meaningful when we have to make treatment decisions. Afterwards, the numbers become 50/50...Either you will recur and ultimately pass from the disease OR you will die sooner or later from something else..... As I move further and further away from diagnosis, I prefer not to let statistics interfere with my living....

  • Deblc
    Deblc Member Posts: 154
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    Rleepac, I think your question and the body of your post is not consistent. The five year survival rate, NOT your overall survival rate, is said to be 93%. 7% have died at the 5-year mark because it has recurred and/or metastasized, within the 5 years. For whatever reason...no one knows why some people progress and some don't. Could have the same exact treatment. Just freaking bad luck.

    I know when we are first diagnosed we agonize over all the numbers. But it's all a crap shoot.

    Lucy..I think the estimated stats are that overall, 30% of all "early Stage" (i.e., I, II and III) BC patients eventually become metatastic.

    I've stopped looking at numbers. All it does is scare the crap out of me, and no-one knows who is more susceptible to recurrence, and when. Did all the recommended treatments and now just hoping for the rest....and trying to live life.


  • voraciousreader
    voraciousreader Member Posts: 3,696
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    deb...stage 3 is considered " locally advanced."

  • Mommato3
    Mommato3 Member Posts: 468
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    I've read in several places that stage IIIa is also considered early stage. I'm not sure why it varies

  • Mommato3
    Mommato3 Member Posts: 468
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    http://www.cancer.gov/dictionary?cdrid=446564

    This is why I thought IIIa was also considered early stage

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    IMHO....all of these descriptions are antiquated terms. While Stage 3A might be considered, "early" stage, survival rates, sadly, differ significantly than for Stages 1 and 2. The NCI does NOT subdivide. They do state though, that subdivided categories will usually relate closely to the general stage category.


    http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage

  • Fe_Princess
    Fe_Princess Member Posts: 125
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    The other 7% could have died from other reasons.

  • windingshores
    windingshores Member Posts: 160
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    I have been reading about the newish subtypes identified by the PAM50 test, particularly Luminal B. Luminal B's have a poorer prognosis and one article said that might account for the 7%.