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

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  • lago
    lago Member Posts: 11,653
    edited November 2013
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    Drug companies are for profit industries. I won't ague that. The reason why the cancer drugs cost so much is research costs so much… and it's a risk. Many of the drugs fail. The company needs to recoup their losses somehow. There are fewer new drugs being made today because of the cost of research. This is not good. But if we had a non profit government drug manufacturer do you think the costs would be better? be able to create the same or more drugs?


    The real crooks IMO is the insurance companies. You know the ones that pay bonuses to their employees for managing to pay out the least amount of money on claims. Oh yeah they do have incentives like that.


    As far as the non profits wanting to perpetuate that isn't true for all of them. I worked for ACS for the past 6 months. People there don't get paid all that much they do it for the mission. I don't know how many times I heard someone speak and say "lets find a cure and put the American Cancer Society out of business."


    We here know that breast cancer is more than one disease, and even more than the categories they list. But when you are talking to the general public you can't get down to every detail. I mean there are still people out there that think if you're early stage and treated your cured. More education is really needed.


    gemini4 don't get me started with well meaning sister that knows better! If it's one thing I have learned from this journey is that you don't know what it's like until it happens to you… and I'm talking about everything not just cancer diagnosis.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2013
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    Jane, the overall 5 year survival rate of 98% does include LCIS and DCIS.


    The SEER database provides 5 year (and everything up to 30 year) overall survival rates for everyone diagnosed with invasive cancer (i.e. excluding LCIS and DCIS - women with this diagnosis are included as a separate category within the SEER database).


    The latest 5 year rate, for those diagnosed in 2005, is 90.5%.


    SEER Cancer Statistics Review 1975-2010 Input "Breast" as the section and look at Table 4.15.


    If you look at 5 year survival by stage, here is the latest data:


    Stage 0 100%


    Stage I 100%


    Stage II 93%


    Stage III 72%


    Stage IV 22%


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


    I don't believe that LCIS and DCIS are included in the "30%" figure that started this whole discussion. I don't know this for sure, but I have seen the 30% (pre-treatment risk of mets) figure quoted by Dr. Susan Love, and I know that she definitely does not include Stage 0 cancers in with invasive cancer (she does not consider DCIS to be cancer).


  • specialk
    specialk Member Posts: 9,233
    edited November 2013
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    I saw this quote today - I was a bit miffed - from a celebri-cancer spokesperson, Bill Rancic, when asked about his response to the new diagnosis of ABC Good Morning America's Amy Robach.


    “Your legacy will be you’ve saved so many lives in the process,” he said of RobachABC’s Amy Robach says her on-air mammogram saved her life – Los Angeles Times. Read more ... ». “With breastAmy Robach reveals breast cancer diagnosis on ‘Good Morning America,’ plans … – New York Daily News. Read more ... » cancer, it’s all about early detection. If you catch it early, you have a 98% chance it will never come back. If she can get one woman to go in and get a mammogramABC’s Amy Robach to Have Double Mastectomy – ABC News. Read more ... » because of her actions and what she did today. That’s a pretty fulfilled lifeMastectomy is just one option for treating breast cancer, but shouldn’t be chosen … – New York Daily News. Read more ... »!”


    The line "if you catch it early, you have a 98% chance it will never come back" is what people take away and believe, and is a real disservice to the truth about breast cancer.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    SpecialK Celebrities/media don't present the true facts all the time. Angelina Jolie said she now doesn't have to worry about getting breast cancer now that she got a BMX. We know that their is still some risk since no BS can take all the breast tissue out. (Happened to a friend of mine in the non cancer side. She had a BMX, was stage IIB/IDC but then got ILC and mets!) I see it every time. Celebs and media can be so frustrating.


    Sometimes we forget Celebs are people too. As you know some of us are more informed than others and it's not easy to keep up.

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    Lago...Hope you don't mind me asking about your friend...could they determine if the mets were from original diagnosis of IDC or were from new ILC?  Thanks!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2013
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    Angelina Jolie has said that she doesn't have to worry about breast cancer anymore, but in other quotes she has said that by having the PBMX she reduced her risk from 80% to 5%. So she is aware that she still has some risk, but she is choosing to not dwell on it. That's probably important both for her kids and for her career. Still, it would be nice if accurate information was always presented.


    As for Bill Rancic's comment, Devil. I suspect he does know differently. I'm pretty sure (but not 100% certain) that his wife had early stage invasive cancer in both breasts so even with a BMX, her risk of mets is probably greater than 2%.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    Not sure but I personally believe it was from the new diagnosis*. The ILC really spread and it was under her S-GAP Flap reconstruction. It's rare for it to happen though. I thought it was like a 2% chance but more like 5%-10%** if you are BRCA+ or have a strong family history. Also I don't know if the 2% is more for a new cancer only and not taking into consideration of local recurrence. Not sure about those of us that are the family history.


    * But I'm no oncologist so not sure if my opinion on this has much weight Winking


    ** Source linky 1 and source linky 2

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited November 2013
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    And, as momine pointed out, the 30% risk is if one doesn't have any adjuvant treatment.  That was an important clarification when interpreting the orginal statistic.

  • ruthbru
    ruthbru Member Posts: 47,146
    edited November 2013
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    Totally off topic; but lago, I love your new picture. It makes me want to go eat in a Greek restaurant in Chicago! Happy

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    Does anyone know the risk for people who don't do all or any of the adjuvant therapy?  I would be curious to see the difference.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    ruthbru thanks but that photo was taken outside a seafood restaurant at Cape Cod right by the shore. I had fried clams and clam chowdah!

  • PatinMN
    PatinMN Member Posts: 784
    edited November 2013
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    jojo68, the risk would vary depending on the stage, grade, node involvement, HER2 status, etc. etc. For me, my MO showed me a chart from a research study indicating that without chemo and Herceptin my chance of recurrence within 5 years was 25%. That was for a 5mm invasive tumor, no nodes, grade 3 and HER2+.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    I agree that Bill Rancic's comment was (I'm sure unintentionally) misleading. It certainly doesn't make a happy news story to say... "if you catch it early, you know that you are pretty much guaranteed to have at least 5 years to complete your bucket list.... and maybe more!"


    And sorry Momine, I'm grateful you found the source that said the 30% is based on those who did NO treatment, but for some reason I thought I had seen different...so I started googling again...


    Look here ---> LINK where it states that "Worldwide, one-third of patients who present with early stage breast cancer will go on to develop metastatic disease". If it's w/out treatment --- how are they finding/tracking all these women who allegedly never see the doctor for it again?


    Or this one ---> LINK "Depending on prognostic factors, in the worst-case scenario, up to 30% of node-negative and up to 70% of node-positive breast cancers will relapse"


    Or this beauty ---> LINK "Around 20 to 30 percent of early stage breast cancer will become metastatic" ... okay, granted that one is from FOX news. Winking






    So I'm google-researching as I type this post and come across ---> THIS BEAUTY!! "approximately 30% and 40% of patients receiving chemotherapy for early-stage disease will develop metastatic disease" WTH? So this one is saying 30 to 40% EVEN AFTER THEY RECEIVE CHEMO! And it's siting TWO sources. Can any savvy research person here look these up? I'm curious to know if "early stage" includes Stage III?





    1. Cardoso F, Fallowfield L, Costa A, Castiglione M, Senkus E. Locally recurrent or metastatic breast cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2011;22(suppl 6):vi25-vi30.
    2. Peto R, Davies C, Godwin J, et al, for the Early Breast Cancer Trialists' Collaborative Group. Comparisons between different polychemotherapy regimens for early breast cancer: meta-analyses of long-term outcome among 100,000 women in 123 randomised trials. Lancet.2012;379(9814):432-444.
  • violet_1
    violet_1 Member Posts: 335
    edited November 2013
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    SpecialK, 

    Re: Bill Rancic's quote...& the like...VERY DISTURBING!  We should write in to ABC...let them know they are imparting inaccurate info. & possibly false hope for many.

    I wonder if Dr. SUSAN LOVE is on this...responding. ..?

    V

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    Early stage does include up to stage IIIA (source)


    These are articles need to be discussed with your onc. As we've seen here the press & celebrities toss around info and stats that aren't always correct or said in a way to imply something that isn't true. The studies sited might be flawed or there were follow up studies that dispute the results. As we know things change all the time.


    The best thing for all of us to focus on is the information specific to our diagnosis. Your age, health issues (or non-issues) along with many other factors go into play. A 22 YO triple negative stage I woman is not going to have the same prognosis as a 55 YO hormone positive woman yet they are both stage I.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    It is more difficult to look at an issue and the stats, and try to figure out what is NOT being considered and presented. That is the kind of thinking that resulted in the discovery of penicillin. The meaning of the Petri dish results was observed, but only recognized by thinking outside the box of presently accepted conventional assumptions.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    DebDylan, are you referring to Tailor-X? If so, I will point out the results of that study do not include between 1/4 and 1/3 of all breast cancer patients that otherwise meet the criteria of the study. Those who are HER2 positive are not eligible for that study and not included.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    Lago, good points. However, I didn't start this conversation because I wanted to know my specific diagnosis stats. And all due respect to my wonderful onc, but I get much more satisfying philosophical conversation here than with him. ;)


    I started this thread (because I'm a "curious george") Happy and wanted to discuss this particular stat and why all of a sudden there is quite a bit of media coverage implying this 30% statistic. I think there has been some great discussion here.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    SpecialK,

    The "% who never recur" brings up the question of just how many years out from diagnosis are the statistics able to account for based on causation? As long as medical providers just can't seem to contemplate the logic of maintaining a sequential simple computerized count tallying each incremental exposure for each patient, we continue to turn a very blind eye to the cumulative risks over the long term posed by annual mammographic exposure, additional CT exposure, etc.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    SusansGarden When you think Herceptin was approved for early stage in 2006 by the FDA… just that alone makes some of these stats meaningless. Approximately 25% of all breast cancers are HER2+. Before herceptin us HER2+ folks have a much different prognosis. At the same time it hasn't been used for 10 years yet so most those stats are meaningless unless they didn't include HER2+.


    There are so many factors to consider. That's why I hate these overall statements. Of course if you read the details of the studies, and understand them that's great but I know I don't feel qualified to know if the study was a good one or flawed.

  • littlemelons
    littlemelons Member Posts: 23
    edited November 2013
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    Boy, this topic really has legs. Very interesting!

    I just checked back to see what my oncologist told me when I first saw him after my diagnosis.  He said that the recurrence rate for stage 1 is less than 20%, that it my case it is about 15% (not sure why mine is lower than the 20% unless its the ER+, PR+, Her- characteristics). He then said that with radiation and hormone therapy my chance of recurrence is between 5 adn 8 %.  Not sure where he got those figures, but they are certainly lower than 30%.

    I am wondering how the passage of time from diagnosis affects the probablity of recurrence.  When I went for my 2-year post diagnosis mammogram, the tech seemed to feel that was some sort of milestone.

    As for the conventional vs. alternative treatment debate.  I don't think it is close minded to go with the eveidence.  Chemo and reaidation have been proven to be effective in decreasing mortality in bc patients.  When an alternative therapy can show the same thing, I'm sure doctors will recommend it.  And I think it is sensible to be skeptical of any profit-making business including "Big Pharma" and "Big Natural".  At least pharmaceuticals are regulated which is not the case with "natural' products.  In the Medscape interview provided by voraciousreader, Dr. Offit points out that "natural" products aren't that natural and we don't really know what is in the products.  IMO, turning your back on radiation and chemo for something supposedly "natural" is taking a risk with your life.


     

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    lago,

    And among that 25% who are HER2 positive, there are those for whom trastuzumab does squat, like me, yet anyone who has received it and doesn't recur is counted as having "benefitted" from trastuzumab.

    (no taxane, no AI, no trastuzumab; NED since 2002)

  • pupmom
    pupmom Member Posts: 1,032
    edited November 2013
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    AA, you are a (anecdotal) sample of ONE. Scientific trials demonstrating the effectiveness of Herceptin, obviously include many more people.

  • lekker
    lekker Member Posts: 238
    edited November 2013
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    LittleMelons - here's a study out of Kaiser So Cal from last year that talks about the risk of death from Luminal A breast tumors (ER+, PR+, Her2- and slow growing) doesn't go away at some magical all clear point of 5, 10 or even more years. The vast majority of early stage Luminal A patients will not recur, but it is important to understand this about the diagnosis.


    http://share.kaiserpermanente.org/article/kaiser-permanente-study-finds-least-aggressive-form-of-breast-cancer-still-poses-risk-for-death-years-later/

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    AA I'm not sure about that. They already had the stats for those who were HER2+ and didn't need Herceptin from all the old stats (I think it was about 25%). Adding Herceptin increased that number. I would thinks a statistician would account for that.


    LittleMelons my onc wanted me to keep my port in for 2 years (total) because the first 2 years are when most recur (or at least those of us with the more aggressive tumors). So yes 2 years is a milestone as is 3 but especially 5 years.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    Littlemelon ~ the recurrence rate he is giving you is not lifetime, it's probably 15 years. And the 2 year milestone the tech gave you is more meaningful for the more aggressive cancers.


    I guess I'm more curious about the overall lifetime chance of recurrence...which I know is impossible to pinpoint....but still makes me curious.


    lago~ Because the approval for using Herceptin is so recent, they really won't know what impact herceptin is having on early stage HER2 cancers avoiding recurrence during their lifetime. So for all we know, it's not going to change the stats much....or it could impact them hugely. We don't know and certainly can't assume anything.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    SusanG if they are counting those who have benefited according to AA then they can easily subtract the percentage that don't need herceptin based on pre herceptin numbers. But you are right, they don't know the lifetime stats for early stage. It's only been 7 years since it was approved for early stage *linky

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    Hi yorkiemom,

    Do the numbers from the studies indicate clearly how many of those who are stage 1 are like anecdotal me? Or do they get lost amidst the blanket recommendation for all HER2 positives to get trastuzumab, like the question of whether or not trastuzumab used alone would work just fine for some groups with early stage bc without chemo?

  • loral
    loral Member Posts: 818
    edited November 2013
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    Lago...Jazz hands.Winking

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    lago, I would have thought so too. But with all the numbers they had at hand from the studies done for traztuzumab usage that resulted in the blanket recommendation for all newly diagnosed HER2 positives to get trastuzumab for adjuvant treatment, somehow they were completely unable to use that information productively to come up with recommendations for the use of it for those who had not been in the clinical trials and had never received it, even though it was very well-known that the period of highest risk for HER2 positives was the first 3 years out from treatment.

    Instead, they deduced first that those who were only 6 months out from treatment could have it. (Presumably the rest were considered dead already????) Then by the time those like me were a year out from treatment, they changed their minds and decided that those who were less than a year out from treatment would benefit. (Huh? Based on the knowledge that it is the first 3 years after completion of treatment that we are at highest risk????) Could YOU trust those numbers if it had been you who was written off by the numbers while every newbie was recommended to receive it?

    They just couldn't see the Petri dish at all, and use common sense.