Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

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

Options
1235770

Comments

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
    Options


    Fran ~ just seeing your news and wanted to say that I am sorry you are having to deal with Stage IV now.


    Beesie ~ regarding your recent post. Playing devil's advocate here and just wanted to bring this up again: ... yes the stats appear to indicate that survival rates are improving. However, as is often argued, bc is being found earlier and earlier with new technologies and more of the population getting mammograms. Therefore, women may get diagnosed 5- 10 years earlier than she would have in the 70's, thus making it appear that she is surviving longer, when she is only finding out that the cancer exists earlier.


    For me, a more impressive breast cancer stat would be to see that Stage IV cancer diagnosis is declining. Are there any stats out for that?

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
    Options


    Kind of answering my own question. Just found this here --> Statistics for Metastatic Breast Cancer


    So frustrating. Seems like it would be pretty damn easy to compile the information if they wanted to.


    From the link:










    What is the real number of people


    diagnosed each year with metastatic breast cancer and


    how many people are living with mbc in the US?


    These are good questions, but first let’s look at how we should define the entire metastatic breast cancer community.

    Cases of metastatic breast cancer consist of two groups:

    •those where the initial diagnosis was Stage IV and

    •those where there was a metastatic recurrence after an early stage breast cancer


    Statistics do not capture those with metastatic recurrence!




    oThe NCI/SEER (National Cancer Institute/Surveillance Epidemiology and End Results) databases 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. Therefore the SEER databases collect only those with an initial Stage IV diagnosis, which represents only a small portion of metastatic breast cancer. Under the current system if everyone was reclassified as stage IV when their cancer metastasized, there would be no meaningful survival statistics because early stage cancers (I-III) would all have 100% survival and stage IV would have 0% survival.)




    oIf you were first diagnosed with an earlier stage cancer, you are not excluded from breast cancer statistics, but you are not counted as being metastatic

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited October 2013
    Options


    Here's a very provocative New York Times op-ed piece written by H.Gilbert Welch, Ph.D. He and Dr. Weiss butted heads opposite one another in a Wall Street Journal piece. I've read Dr. Welch's book and let's just say it's statistics pornography! Honestly, I can't get enough of a fix from Dr. Welch. I tend to agree with him and his colleagues who argue that screening mammography saves lives, but not as many lives as we think. Here's a link to his recent op-ed piece. If you don't fancy statistics, then Handel Reynolds, MD's book, The Big Squeeze, coming in at under 100 pages is a great read about the controversy of breast cancer mammography and statistics. Enjoy!


    http://www.nytimes.com/2012/11/22/opinion/cancer-survivor-or-victim-of-overdiagnosis.html?_r=0&adxnnl=1&pagewanted=print&adxnnlx=1382480734-7XvIqmLhJyui36PxWVcFkg


    http://www.amazon.com/The-Big-Squeeze-Political-Controversial/dp/0801450934

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


    Susan, I don't have time to find this data now, but recently the same question came up and I was able to find data that shows that in fact the percent of women being diagnosed with localized cancer, regionalized cancer (nodal involvement) and the percent being diagnosed with mets (at the onset), has been virtually unchanged during the time span that we've been seeing the survival rates improve. In fact if I remember correctly, slightly more women are actually being diagnosed with nodal involvement these days than in the earlier years. So it's the opposite of what you might expect.


    To me, that information confirms that the survival rate increases are in fact real and that current treatments are having an effect on survival. While the number of women diagnosed initially with Stage IV cancer is holding steady (and unfortunately all these women eventually will succumb to breast cancer), the number of women who are initially diagnosed with earlier stage disease who then go on to develop mets is declining. This by definition (or math, really) has to be true because we see fewer women dying of breast cancer.


    I'll look later to see if I can find my earlier post about this and repost the data here.


    As for the point about the SEER data only recording the Stage at the time of diagnosis, yes, that's true. But I don't reach the same conclusion that "Therefore the SEER databases collect only those with an initial Stage IV diagnosis, which represents only a small portion of metastatic breast cancer." The SEER database ultimately represents everyone with metastatic cancer; what it doesn't tell us is when they developed mets, either the year or the number of years post-diagnosis.


    The fact is that no one dies of breast cancer unless they develop mets - breast cancer in the breast is a 100% survivable disease. Therefore if the 20 year survival rate for those diagnosed in 1990 is 67.5%, this means that at least 32.5% of the 1990 women developed mets, and probably in total it's closer to about 37%, if we assume that 20 years post-diagnosis there may be another 5% (or so) of women who have developed mets but who continue to survive. I didn't include this data in my post yesterday, but the most recent SEER report does show that the 1975-'79 women, who had a 20 year survival rate of 51.7%, had a 30 year survival rate of 46.2%. So an additional 5.5% of the '75 - '79 women succumbed to breast cancer over those next 10 years.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited October 2013
    Options


    beesie.... Dr. Welch goes into great detail with respect to more patients surviving breast cancer due to better treatment rather than getting screened earlier. Unfortunately the mammography debate centers on exactly who we are "catching" through screening and saving lives...vs. who we are "catching" through treatment. Somewhere in those numbers lies the truth....

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
    Options


    VR ~ thanks for the link to the article. A lot of what was said really resonates with me.


    Beesie ~ thanks for the additional info. So now I'm wondering about non invasive BC. (dcis/lcis). Has non invasive always been included in the statistics of being diagnosed with BC? and....has the diagnosis of non invasive cancer gone up?

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


    Nope, Stage 0 cancers are not included in any of the SEER data I provided. SEER does report on DCIS but they keep it as a separate category and never combine the DCIS and invasive cancer data.


    Why are you finding it difficult to believe that this data is accurate? The SEER database is the best data available on long-term survival, and I think what the data shows is great news. Are we where we need to be? Of course not. But there have been significant improvements in survival rates. What causes you to think that there haven't been?

  • ruthbru
    ruthbru Member Posts: 47,152
    edited October 2013
    Options

    Well, my take on all of this is: the statistics are very important when you are making treatment decisions, but after you have done all you can (and/or choose to do) medically, and if you are doing all you can with a healthy life style.....then you should just forget it (except as an academic exercise) and go out and enjoy your life....worrying about it is not a productive use of time. The other thing I've found to be true is: never trust a big, shocking headline about what any study shows (good or bad). It is always overblown, and never tells the whole story.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
    Options


    Beesie, it's not that I think the data is inaccurate. I am questioning/wondering about different ways it can be interpreted, what conclusions are being made from it and how concrete are those conclusions. I also like to question the cause and effect relationship that is being implied.


    Edited after I saw Ruthbro's post. For me this is definitely an academic exercise. I don't fret about BC. I am just more interested in this as a subject since it hits close to home and I've done a lot of reading on the subject. :)

  • ruthbru
    ruthbru Member Posts: 47,152
    edited October 2013
    Options

    Off topic, but I want the emoticons back!!! (insert frustrated face)

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
    Options

    Vor,

    I so agree w you...;) ...about M.screening vs better treatment thing more likely saving lives...

    Violet

  • sduch1
    sduch1 Member Posts: 25
    edited October 2013
    Options


    Do the SEER stats only represent deaths related to BC? Or, do they also include the deaths that happen 10, 20, 30 years out to people who may not survive due to the aging process and other factors?


    Also, I hate the idea or phrase that there is no cure. I understand that there is no definitive cure (which we need and I pray for every day!) but aren't the 70, 80, 90% of women who don't develop mets and whose treatment did work for them essentially cured of their disease?


    Thank you for taking the time to interpret the stats! I am hoping that we are truly in the midst of seeing great improvements in survival and targeted treatments. A friend of mine had the opportunity to serve as a patient advocate for Genentech and her impression of her visit there was that there really are people working around the clock to develop new drugs to treat BC.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited October 2013
    Options


    Sduch....If you live a long life and die in your sleep, you are among those who were "cured" of breast cancer. If you go to cancermath.net and put in the characteristics of your tumor, you will see a graph (btw..you have a choice of how you want your graph displayed...I choose the picture graph with smiley faces). The graph will indicate, based on your age, tumor characteristics, and treatment, using a time period of a decade....how many patients who are your age should be alive at 10 years. It also shows how many people your age should die from breast cancer in that period of time AND it shows you a number of people who should be gone from other causes. I find the graph very gratifying. Based on a hundred people my age at diagnosis, a score will die of other illnesses, while ONLY 1 person will die with the characteristics of my type of tumor with the type of treatment that I had. Putting that into perspective, I should be more actively thinking of what claimed the lives of the score of other patients, rather than the breast cancer. AND, I should be concentrating even more on the 85% of people who do live on to reckon with ADDITIONAL DECADES OF LIFE AHEAD OF THEM!

  • Leigh74
    Leigh74 Member Posts: 1
    edited October 2013
    Options


    • 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.


    So this statement is confusing because if you read other articles, look at oncotype scores, etc you can have a recurrence in the breast area or a distant recurrence. A distant recurrence can be more serious like lungs, brain etc. Also, it says "UP TO" so maybe the stats are more like 25- 27%. I think having a solid study looking at specific stages women are in, treatments they received or even refused, lifestyle, smokers, weight, hormone positive/negative, nodes involved or not, etc would be more substantial. As a salesperson with a marketing background this seems like craftly wording to me! I am NOT minimizing our risk because as a 38 year old mom with a stage 1 cancer I do read a lot of research, etc on recurrence rates, etc. I am doing TCx4 now with a gray area oncotype score just because I want to do all that I can for me and my family! However, I think we have to be careful being scared over this statement.

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


    Leigh, I had exactly the same reaction as you to that statement. It's really not providing any definitive information and yet it almost seems as though it's intentionally worded to scare people.


    "Up to 30%" could also be worded as "No more than 30%". Both statements are equally correct and are saying the same thing, but the impression that's left by my statement is very different, I think. And like you, I did find it odd that the quote is talking about "recurrences", which would include both local and distant recurrences, and yet the examples given only mention distant recurrence sites. This could have been said instead: "When breast cancer comes back, it may be localized to the breast area however some recurrences involve spread to other parts of the body such as the bones or the liver or lungs."


    And there is the fact that the statement refers to "early stage breast cancer patients". That includes everyone who is Stage I, everyone who is Stage II and those who are Stage IIIa. Node negative and node positive. Grade 1, grade 2 or grade 3. ER+/PR+ or triple negative or HER2+++. The range of diagnoses included in that statement is simply too broad for it to have any meaning.


    But if the statement was made with the intent of scaring people, it seems that it met that goal!

  • lekker
    lekker Member Posts: 238
    edited October 2013
    Options


    My OncotypeDX score was 13 and translated to a 9% risk of distant recurrence within 10 years. I had a small (1.5 cm) grade 1 tumor that was ER and PR + and HER2 - and all sentinel nodes were clean. I pretty much have one of the lowest risk profiles you can have with an invasive cancer but according to Genomic Health, 9% of women just like me end up with mets within ten years. Factor in that the risk of recurrence never goes away, and I can see the percentages even for a low risk tumor - while maybe not 30% - get up there. Then you factor in the highest risk tumors which probably exceed 30% recurrence rates (and everything in between) and you start to see where these numbers might not be so far off. At least it doesn't seem that far fetched to me.

  • doxie
    doxie Member Posts: 700
    edited October 2013
    Options


    Like lekker, I was Stage I with a 1.5 cm tumor, no lymph nodes involved. Unlike her I had a much higher Oncotype score. I had chemo and am on AIs. I did chemo in part to give myself a lower chance of recurrence if I couldn't manage AIs. Early on I had a serious eye SE that raised the possibility I'd have to go off them. If that would have happened, my distance recurrence rate would have been about 30% in 10 years even with chemo. And this did not figure in a local recurrence or a new tumor in the other breast. Staying on AIs gives me a good chance of never experiencing any recurrence. But then I had a relatively aggressive tumor for stage I and node negative, so I'm an outlier.


    My point is that for ER + women who complete their anti hormonal therapy, the 30% may be way overstated. Also for ER+, we now know that exercising and losing weight also helps reduce recurrence. So for those of us who can complete anti hormonal treatment and/or do anything else that is known to reduce risk, our collective risk should be much lower that what this data indicates.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
    Options


    Beesie ~ I do think that statement going around is worded with the intent of getting people's attention. I'm still on the fence as to whether or not that is a good thing or a bad thing.


    Looking at it from a personal anecdotal perspective, many of the people I talked to when I was first diagnosed assumed if you "caught it early" you were completely in the clear. So do you become a "Debbie Downer" and keep explaining.."Well... technically..."?


    The current media pinkwashing implying that BC is 98% curable is incredibly misleading. Trying to mislead the general population in the opposite way isn't any better. I do keep seeing this 30% being thrown around this Pinktober. Just curious how it started and why now? Do those kind of menacing statements help bring in more attention and/or money for research for Stage IV and the "cure"?

  • sduch1
    sduch1 Member Posts: 25
    edited October 2013
    Options


    My general impression is that there seems to be an effort to shift the attention and money away from education and more towards developing treatments and a potential cure which I am fully on board with! It's just hard, having had breast cancer, reading language that is meant to scare people. It seems to me in reading a lot of recent statistics that the stats in many instances are really good, 80%+ DFS, certainly not 98%. But, who knows, I have a hard time interpreting all of the different studies and stats.

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited October 2013
    Options


    Yesterday Anjelina Jolie's doctor was talking to Giuliana Rancic and she said 98% of early stage breast cancer is "cured". I actually backed up the video twice because I could not believe she said it. She must have meant. 98% live 5 years which is the published stats. No wonder we and the public are confused!

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


    TwoHobbies, the problem with a statement like that is you don't know her definition of "early stage" and we can't assume that her definition is the same as the 'official' definition. If she is including DCIS (which normally would not be included in these types of stats) and perhaps only a portion of Stage I (maybe just T1a-b tumours) then it's possible that she is correct or close to correct. It's hard to believe she would use the term "cured" if she is talking 5-year stats only, but that's possible too. In any case, to make a statement like that without qualifying or explaining it is very irresponsible and very misleading.

  • kaza
    kaza Member Posts: 122
    edited October 2013
    Options


    Thank you Beesie, it is all so confusing, all these different stats. just so pleased we have each other here x

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
    Options


    I posted this in RESOURCES, but thought some of you here might be interested in this...;)



    FREE: Cancer Progress Report 2013


    I get the card to fill out in Cancer Today magazine for my free copy.


    But if you go to the site:


    cancerprogressreport.org you can ask them to mail you a


    FREE COPY.You can also view it online, but it's pretty lengthy; I like to have a hold-in-my-hands paper copy to mark-up & save...;) It's an interesting & extensive annual report (thick magazine type report) put out by the


    American Association for Cancer Research (aacr.org)


    The report also has tons of links to further studies--a GREAT RESOURCE! Happy


    Last year's was fabulous.


    Violet

  • SusansGarden
    SusansGarden Member Posts: 754
    edited October 2013
    Options


    Thanks Violet!

  • violet_1
    violet_1 Member Posts: 335
    edited October 2013
    Options

    You're welcome. ..:) REALLY WORTH SENDING FOR...;)

    V

  • Momine
    Momine Member Posts: 2,845
    edited November 2013
    Options


    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).

  • encyclias
    encyclias Member Posts: 61
    edited November 2013
    Options


    Thanks for getting that clarification. Makes sense now.


    Carol

  • ruthbru
    ruthbru Member Posts: 47,152
    edited November 2013
    Options

    Aha! Thank you, Momine!

  • Momine
    Momine Member Posts: 2,845
    edited November 2013
    Options


    Welcome, she also said that for most patients the outlook is way better than that figure. The figure is based on loads of data from clinical trials of chemo, as far as I could understand (I am also thinking some of that data is quite old).

  • TessaW
    TessaW Member Posts: 148
    edited November 2013
    Options


    Wow Selena, I hadn't heard that statistic. I have to decide SOON if I want a bilateral mastectomy or just take off the R. Why wouldn't someone tell me this to help make a decision???? I HATE having to do it AT ALL of course, but knowing I don't have the BRCA gene I was leaning towards only 1. I certainly don't want it to metastasize though! UGH, this is so freakin hard! I'm a single mom. I was born with cerebral palsy and have always walked with a limp. I'm not tall. I don't have great skin or hair, but I have great boobs. NOW THIS. So, when your best physical feature is your breasts and they have to remove them it does at times make me think "Who the heck is going to want to date me then?" I know that's not the most important thing, but my son deserves a daddy and my dream has always been to have a happy close knit family. That hasn't happened yet so it gives rise to concern.