Fill Out Your Profile to share more about you. Learn more...

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


So I started this question in another thread but was hoping for additional feedback.


With MBC awareness day last weekend, a stat is going around that caught my attention. Basically says that 30% of early stage BC patients will eventually have their bc metastasize AFTER adjuvant treatment. Susan G. Komen even states it here --> Click Here


So I feel like I've researched the hell out of BC since my diagnosis in 2010 and have never heard/noticed that stat before. I'm thinking...oh that must be some sort of average through stage 3, and certainly wouldn't be very relevant for Stage 1?


But then somebody kindly directed me to this link --- > Click Here


According to the link it states (my bold):


"Quote from The Oncologist Journal “Prognostic and Predictive Factors in Early-Stage Breast Cancer” (May 2004) “The poor outcome with the Halstedian approach, as well as the observation that 20%-30% of node-negative patients ultimately develop metastatic disease, led to the currently held micrometastatic paradigm. This paradigm asserts that many patients with early-stage disease have distant micrometastatic disease present at the time of diagnosis, putting them at risk for the later development of overt metastatic disease."


So "node negative" would clearly mostly include Stage I. So it is saying that 20-30% of stage ONE bc patients will metastasize? That's certainly not what the oncs or cancer math tell you. Though looking at cancermath it only gives you stats for 15 year survival. It's not telling you your percentage of never having BC again in your life.


The link says "Statistics are not collected for metastatic recurrences which comprise the larger portion of mbc cases. Statistics are only gathered for initial diagnosis of Stage IV metastatic disease."


WTH? I can't believe they don't track how many original BC's end up metastasizing? I would think that would be valuable information. If the 20-30% really is true, I think it definitely should be more publicized. Instead of this widely advertised stat of 98% survival rate. (when it's only talking 5 years). Shoot, I think a lot of Stage IV bc's are outliving 5 years.


None of this changes what I would/did do for treatment (I think! - now I'm wondering about the 10 yrs instead of 5 on tamox). I'm pretty much of the mindset that you do what you can with the knowledge, advice and resources that you have at the time and then try not to worry about it. It's out of your hands at that point. But I would like to know the true stats of how many bc's come back no matter what the hell we do for treatment. I'm sure it will probably scare the hell out of some people, but it would also get more people demanding more money goes towards a cure than this pink sugar coated misleading happy wappy "nobody dies of bc anymore" crap. I don't know. What do you all think? I was lead to believe that I had a 90%+ chance of never seeing bc again, when it really could be 70 to 80%? Does it matter at this point? Are we better off not knowing? Or is knowledge power in this case?


*****Edited to add: *******Momine (on page 6) added this ~ "I tracked down that 30% thing, because it just didn't sound right. The statement is attributed to Dr. Iman Mohamed, a breast cancer specialist. I tweeted her to ask what this number means. She kindly responded that this is the average recurrence of all breast cancers if not treated with systemic therapy (chemo, tamox, AI)."


So that is certainly reassuring news for early stagers, however, should not diminish the fact that we need a cure and better treatments for Stage IV. And the media needs to stop with the scare tactics and misleading statistics to the general public.


Edited AGAIN ... Despite Momine's reassuring statement from Dr. Iman Mohamed... I'm still finding crap on the internet saying similiar stats even AFTER treatment... not w/out treatment. (See page 8) And the conversation continues....... :)

«13456770

Comments

  • fredntan
    fredntan Member Posts: 237
    edited October 2013


    wouldnt it be nice if komen put that 171 million that goes towards education towards research. 69 million in 2012 went to research. i am all for education. but .....enough allready

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited October 2013
    Unfortunately, I was very aware of this statistic; that 1 in 4 women with early-stage breast cancer will progress to metastatic disease, with- or without lymph node involvement. It's another reason why I get so angry at those who insist that "finding it early" means a "cure".
  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    Shoot. How did I miss that? Perhaps selective memory in those early days of diagnosis. Or maybe just hearing/reading the parts I wanted to hear.


    I wonder why they wouldn't track that statistically?

  • rozem
    rozem Member Posts: 749
    edited October 2013


    susansgarden - I saw your question on the other thread. Yes I find the stats extremely confusing - plus the 10% spread that they are talking about is huge (20 TO 30% will go on to stg 4). I just wish there was more consistency on reporting. That 98% stat is so misleading to the general public. People assume that the vast majority/most people survive this disease which is not the reality. I am concerned about the way they are quoting/keeping stats because I believe focusing on that 30% will get people to understand that we need a CURE with a focus on dollars for RESEARCH and prevention studies


    as for applying those stats to our individual situations - I don't even bother anymore because it really doesn't make me feel better finding the lowest stat out there, knowing that it COULD happen is enough to keep me awake at night - the percentage needs to be 0 or it is irrelevant to me

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    "the percentage needs to be 0 or it is irrelevant to me"


    Amen.

  • Obxflygirl1
    Obxflygirl1 Member Posts: 106
    edited October 2013


    your quote from the oncologist journal is from 2004?..... So maybe there are more current stats with better risk averages... Or maybe I'm just wishing a whole lot.....?

  • momof3boys
    momof3boys Member Posts: 63
    edited October 2013


    I think I would put more weight on individual risk....and the Oncotype test results, plus what your treatment was.....

  • specialk
    specialk Member Posts: 9,211
    edited October 2013


    Several things to keep in mind - the quote is early stage - that means up to IIIa, not just stage 1. Also, the 98% stat is crap because it includes DCIS, which will never be metastatic. It skews the survival stats and I think is used purposely, particularly by Komen, to try to hoodwink the public into thinking we have made great progress due to their "early detection" efforts.

  • cookiegal
    cookiegal Member Posts: 527
    edited October 2013


    biology is more important than staging...so remember this includes triple neg, her2+, and other more aggressive cancers.

  • LizA17
    LizA17 Member Posts: 102
    edited October 2013


    Couldnt have said it better SpecialK!

  • gonegirl
    gonegirl Member Posts: 1,022
    edited October 2013


    stage iv is stage iv, sadly. The stats haven't changed in 20 years. 40,000 people a year die of breast cancer. My cancer is very aggressive and was stage iv out the gate, in spite of regular mammograms. We need a cure.

  • ruthbru
    ruthbru Member Posts: 46,701
    edited October 2013


    There are too many variables to make a blanket statement:


    * as SpecialK noted, everyone who is not stage IV is considered 'early stage'


    * cookiegal noted some of the many different considerations; some more off the top of my head are BRCA status, cell grade, rate of cell growth, surgical margins, IDC/ LCIS/Pagets all and their subsets, triple positive, both ER/PR positive, ER positive/PR negative...the list goes on and on...


    * did the patient agree to and complete the Standard of Care recommendations of her medical team?


    * did the patient complete the complete 5 years (or more) of recommended anti-hormonal therapy (and not skip pills/forget/take vacations from the pills)


    * has the patient exercised religiously (the biggest risk reducer we can do for ourselves), maintained an appropriate weight, limited alcohol? taken daily low dose aspirin? etc. etc. etc. etc.


    * If those are 2002 statistics, remember they were gathered from women who were in treatment 5, 10, or more years before then...so whatever those statistics say, our actually numbers should be higher because of the advancements in diagnosis and treatments since then.

  • ndroby
    ndroby Member Posts: 16
    edited October 2013


    I believe if this were primarily a man's disease, there would already be a cure. When my mother died in 1962 at the age of 33, my family said the news media was talking about being so close to a cure. My family hung onto every word of those news reports....only to be disappointed. Here we are 51 years later...

  • ruthbru
    ruthbru Member Posts: 46,701
    edited October 2013


    I don't know....men have mothers, wives, daughters, and it is worse to see someone you love be sick than to be sick yourself.....just my opinion, of course.

  • ndroby
    ndroby Member Posts: 16
    edited October 2013


    Having worked in healthcare for 32 years, I truly believe that if breast cancer were a man's disease, there would be a cure. I've seen too much.

  • ruthbru
    ruthbru Member Posts: 46,701
    edited October 2013


    Then we need more women in medicine/research!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2013


    There is no cure for prostate cancer and that's exclusively a men's cancer.


    If you read about the history of cancer and cancer treatment, it becomes apparent that we are still at the early stages of developing cancer treatments. The understanding in 1962 of breast cancer and breast cancer treatment was quite different than what we know today. Even in the 8 years since I was diagnosed, our understanding of breast cancer has changed considerably. Yet today the medical and scientific communities appreciate that there is much that we still don't know. In 1962 there were no mammograms or ultrasounds and we were decades away from MRIs. In 1962 mastectomies were the standard of care. Lumpectomies + rads didn't become an acceptable treatment option until the late 1980s. The treatment and survival benefits of chemo were not understood until well into the 1960s and '70s. The BRCA genes were only discovered in the early '90s. Hormone therapy wasn't developed until the '70s and wasn't in wide use until the '90s and 2000s. The development of targeted drugs is in it's infancy.


    Of course we are not where we want to be or need to be, but humanity has been aware of cancer and breast cancer for a very long time, and yet most of our true understanding and the development of treatments has come over the past 40 years, and much of it over the past 20 years.


    About the 30% stat, I find Komen's comment to be confusing: "Up to 30% of early stage breast cancer patients will have recurrences, as early as a few months and up to 15 years or longer after initially being diagnosed. When breast cancer comes back, it spreads to many other parts of the body, including bones, liver, lungs, and even the brain." First, it is referring to "early stage", not Stage I or node negative, so this would include Stage I, Stage II and Stage IIIA. Second, "up to 30%" covers a lot of ground. The others sources quote the figures "20% - 30%", which is a pretty wide range - there is a big difference between 20% and 30%. Lastly, Komen's comment references "recurrences", which of course could be local or distant. They then go on to talk only about distant recurrences but I wonder if the 30% figure might in fact include both local and distant.


    I recall reading some time ago in Dr. Susan Love's Breast Book that "20% - 30% of those with negative nodes have some spread elsewhere." This wasn't however a statement about future risk but it talked instead to the situation at the time of diagnosis. She was saying that although these women have negative nodes at the time of diagnosis, some cancer cells have already moved into other parts of their body, either undetected through their nodes or through the vascular system. Her point was that this is why chemo is given to many women even if they are node negative. The larger the tumor, the more aggressive the pathology of the tumor, the more likely that a few cancer cells may have escaped into the body. The role of the chemo is to find and kill those few stray cells that have already spread, so that mets never does develop. So the 20% - 30% figure that Dr. Love quoted does not translate into the same percentage of women eventually developing mets - the percentage should be significantly lower because most of the patients at greatest risk get chemo.

  • missyoumom
    missyoumom Member Posts: 1
    edited October 2013


    There is only one problem with that statistic. The study was published in 2004 which means the data for the study could be many years before that. It is impossible to compare that statistic to people diagnosed after that study was released bc so much has changed treatment wise. Its also very generalized and who knows what the demographics were. How did they follow these people if they did not have a recurrence? A critical analysis of any given study design can be riddled with controversy which is why doctors consider some studies to be have higher validity than others. Breast cancer statistics change quickly. I do value the scholarly research and find it very helpful in terms of understanding this disease but anything dated prior to this year or last is already outdated. Early diagnosis is a cure for many people. Having cancer treatment once doesnt make you immune to getting it again. I would seriously argue that 30 percent percent of people with stage one cancer go on to develop metastatic disease because the cancer has already spread at time of diagnosis. That is a theory not a fact and would be nearly impossible to prove.

  • wyo
    wyo Member Posts: 165
    edited October 2013


    good evening all- I am incredibly lucky to be a nurse and being treated where I work running surgery ( definition of irony) My surgeon and oncologist both said the same thing- I have said it myself as a nurse and its true about a lot more than breast cancer- you can look at odds, percentages and numbers but those are applied to a large group or population. If you are the one to have recurrence the "odds" may only be 5% but for you its 100%. Its a little harsh but its the truth for me and I liked being treated like a thinking adult

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2013


    wyo, I understand your point but I prefer to go with the stats. To me, if you take the "it's either 0% or 100%" approach, it means that someone who has a 5% risk might have the same worries and concerns about recurrence as someone who has a 35% risk. And that in turn might lead to decisions and treatments that are not really appropriate or necessary for someone with such a low 5% risk. And it will probably lead to a lot of unnecessary stress.


    I prefer to know the group I'm in. Does my diagnosis and pathology put me in a group where 35 out of 100 of us will have a recurrence? Or does it put me in a group where only 5 out of 100 of us will have a recurrence? Of course I know that whichever group I'm in, I might be one of the women who has a recurrence - I'm not naive about that and I understand that the stats apply to the group and not to me as an individual. But the simple truth is that if I'm in that first group, I have a much greater chance of recurrence than if I'm in that second group. That's significant and that's important for me to know. In the end, yes, it's true that I will either have the recurrence (100%) or I won't (0%). But my prognosis is based on the group I'm in, my treatment decisions are based on the group I'm in (based on the stats, really), and what I do about my risk level and how I feel about my risk level are all based on the group I'm in.

  • wyo
    wyo Member Posts: 165
    edited October 2013


    I absolutely respect that Beesie and I am early in the journey but have been a nurse for 30 years. I want to believe the stats that say the recurrence is this or that but I think in my mind I am too ingrained. I have seen people beat amazing odds and people who never should have a problem have tremendous issues.


    I wish you to be in the group that beats all the odds!!

  • gonegirl
    gonegirl Member Posts: 1,022
    edited October 2013


    interesting article by Dr Love in the Huffs ington Post entitled All Cancer is Metastatic. In it she says all cancer is in the system if it's invasive, hence the chemo. She also says the definition of metastatic has changed, now it must be seen on a scan rather than only felt. Interesting read.


    BTW. Instead of thinking 30% will move on to mets, think that 70% won't.

  • NWArtLady
    NWArtLady Member Posts: 239
    edited October 2013


    Knowledge is always power. This is an excellent post and voices much of the same thoughts I frequently have!


    And gritgirl, I like how you think! :-)

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013


    Great Conversation! I like the 70% won't thinking too. Reminds me of a cartoon. :)


    image

  • ruthbru
    ruthbru Member Posts: 46,701
    edited October 2013


    Ha!

  • Obxflygirl1
    Obxflygirl1 Member Posts: 106
    edited October 2013


    Great conversation and like the fact there are studies and links mentioned that we can make our own assumptions from........The bottom line for me is that any risk is not acceptable and I can only pray a cure is found to beat original cancers and/or metastisis .

  • Chickadee
    Chickadee Member Posts: 469
    edited October 2013


    one fact is certain, there is still no cure!


    So much money thrown at education and awareness has changed nothing.

  • nancyhb
    nancyhb Member Posts: 235
    edited October 2013


    Interesting conversation - I learn so much from everyone here!


    So if us "early stagers" have micro-mets floating around - isn't chemo supposed to take care of that? And if chemo doesn't take care of the micro-mets...then why the hell are we enduring this horrible treatment? (I know the answers to these questions...I guess they're more of an overall spiritual sort of musing....)


    With my Oncotype score (and choice to discontinue Tamoxifen) my recurrence rate is somewhere around 23% (I think) - but as gritgirl pointed out I try hard to think of the 77% chance my cancer won't recur. And it pisses me off because very few people understand that "early detection" did not "cure" me, and think I'm over-reacting because, hell, my hair came back so I must be fine now. We are all at risk of recurrence, regardless of percentage. My doctor said the same thing as wyo's - it matters not what my Oncotype score is, or what my chances of recurrence really are - if it recurs I'll believe the odds were against me, and if it doesn't recur I'll still spend my life wondering if it will. Like Beesie, I want to know where I fall within the percentages, but it's still a crap-shoot.

  • gonegirl
    gonegirl Member Posts: 1,022
    edited October 2013


    even how long you live with stage iv is a crap shoot. As an oncologist said, it depends on the biology of the tumor and the biology of the person with that tumor.


    Listened to a talk from LBBC today. Interesting work on copper depletion out of Cornell. Hopefully they find a cure. This sucks.

  • Pbrain
    Pbrain Member Posts: 773
    edited October 2013


    I think a couple of things. First, I don't agree that if this was a man's disease we'd have a cure. I know too many good men who have died from prostate cancer. And I see researchers are finally realizing that what works for us ganders seems to be potentially effective for the goose, so PC is definitely lagging behind BC.


    Second, I feel that the theory of micrometastases has a lot of weight. I worked with a researcher at UNC hospitals who gave a lot of very informative talks about it. To me, it is more like a distant recurrence actually, but it could be happening somewhere else besides the breast. The thing to continue to take into account is how systemic your initial treatment was. Many stats contain people who had substandard treatment, or did not continue their maintenance treatment (ie hormonal therapy).


    Gritgirl, I work for Roche. Have you taken a look at Perjeta or Kadcycla? There is so much for us Her2+ gals these days. :-)


    Bessie, I just read your post. You said exactly what I was trying to say!!!