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

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  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    lago ~ looking at your linky, it has more stats that fall into the original topic...


    You are mentioning "those who have benefited" from HER2. But the info in your link states:


    "Herceptin is the first and only FDA-approved, HER2-targeted biologic medicine that may help women with advanced HER2-positive breast cancer live longer, when given with chemotherapy, compared to chemotherapy alone (median overall survival: 25.1 months vs. 20.3 months; hazard ratio 0.80; p=0.046)".


    I know if I have stage IV cancer, than every month counts, but crikes...4 months extra? That's it?


    So when they say this......"Women who received Herceptin plus chemotherapy had a 52 percent lower risk of their cancer returning compared to women who received chemotherapy alone".


    52% lower risk of it returning when? Obviously not over a lifetime. Is it just a couple of years? Maybe we'll find out that Herceptin is just delaying the inevitable in a lot of the cases like the horomonal therapy. Who knows?


    edited to better clarify what quotes were from the site

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    Susan again we don't know what they mean by 52%. Is is 52% of all HER2+ or is it 52% of the 75% that recurred without it. Also I too was thinking "for how long?" when I read that.


    Also remember that when you read only 4 months that's an average. There are some that it has no effect and some that live for years. I our weather reporter here was stage IV from the start… 7 years ago. She did have some DCIS just removed but now she is NED again.


    AlaskaAngel I hear you. I was trying to get into a study, not sure if it was Pejerta. They changed the rules and were accepting stage II and III but now you had to be node positive. So someone who was stage IIA with micomets in one node could participate but my stage IIB large tumor, no nodes no longer qualified even though my risk is higher.

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited November 2013
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    Thanks, lago. Right on the nose. If they would have said something like "those stage 1's who have the high-risk factors can have trastuzumab, and those who don't shouldn't", that would have made some sense. But they just lumped every HER2 positive who had missed out for adjuvant trastuzumab into how far out they were from their treatment.

  • pupmom
    pupmom Member Posts: 1,032
    edited November 2013
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    AA, I don't know how to link stuff, except pictures, on this board. But, so much research has been done on the benefits of Herceptin, that you should easily be able to google it.

  • littlemelons
    littlemelons Member Posts: 23
    edited November 2013
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    Thanks for the responses and the links. This is a quote from the the article referenced by Iago regarding recurrence after 5 years. "In those treated for stage I breast cancer -- the tumor was small and had not spread -- breast cancer came back after five years in just 7 percent."  I find even 7% after 5 years relatively high for Stage 1.  That is one out of every 14 Stage 1ers.  That's quite a few of us....and that is after surgery, radiation, and hormone and/or chemo therapy. 

    "Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said. "That was certainly a finding that we were surprised to see," ...." Does this mean that more people with higher grade tumours recur earlier than 5 years; whereas, those with lower grade tumours experience a longer delay in the recrurrence due to the slower growth of their cancer.  Overall, do those with higher grade tumours recur more frequently than those with lower grade tumours, or is the overall recurrence rate the same for low and higher grade tumours, just timed differently?

    I would be interested in seeing a breakdown of recurrence rates by grade.  We know that grade 1 is slow growing and grade 3 is relatively aggressive, but grade 2 is a bit of a mystery to me.  The Nottingham score is made up of the sum of 3 individual components.  My scores were: tubule formation 3, nuclear pleomorphism 3 and mitosis 1 for a  total of 7, so a relatively high grade 2.  But do those 3 individual components impact the risk of recurrence or mortality from bc differently? For example, is it better to have low mitosis score than a low nuclear pleomorphism score?  I have tried to find information on this, but was not successful.  The oncotype test which is supposed be a good predictor of recurrence is not done routinely here in Canada.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    "Women who had low-grade, or less aggressive, tumors, actually had a higher risk of late recurrence than women who had higher grade tumors, Brewster said. "That was certainly a finding that we were surprised to see," ...." Does this mean that more people with higher grade tumors recur earlier than 5 years… Yes


    whereas, those with lower grade tumors experience a longer delay in the recurrence due to the slower growth of their cancer.… Yes


    Overall, do those with higher grade tumors recur more frequently than those with lower grade tumors, Yes


    ----------------------


    Basically it's saying that higher grade tumors are more likely to recur than low grade and it's usually earlier. But many of our tumors were mixtures. I know my tumor was both IDC (5.5cm) and DCIS (1cm). They base treatment on the most aggressive part of your tumor. So if you did have some low grade with the high grade how would you know. Would they mention that on the path report?

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    So, what about us Grade 2ers?...Not early or later....I guess just in between....curious what amount of years that would be.

  • [Deleted User]
    [Deleted User] Member Posts: 814
    edited November 2013
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    A most interesting thread. Ive only read 2 pages so far but intend to read everything here.
    So far I'm really identifying with the fact we have put up "boundaries" almost like segregation and Im pleased to see comments that are more realistic about this.
  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    Kayb...Well, that is just frustrating...kinda scary to be either one or the other and not knowing.

  • doxie
    doxie Member Posts: 700
    edited November 2013
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    The Oncotype score helps somewhat with determining where your grade 2 falls. Mine was higher than some grade 3 scores, one point from high risk. I've read that determining grade can be somewhat subjective. So those of us either borderline high or low may actually be the adjacent grade. I was a high grade 2. No matter what it is difficult determining how to treat anyone in a gray area. None of us really knows our true risk or length of life. I choose to believe I got and am getting the appropriate treatment and am trying to move on with my life w/o what ifs and maybes.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited November 2013
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    When I spoke to my genetic MD ( who really seems to know what he is talking about, all he does is breast cancer risk assessment now after having been a BS, also has published this book  http://www.amazon.com/Truth-About-Breast-Cancer-Assessment/dp/0881001155)  he said that grade is old fashioned and subjective, and that it is trumped by oncotype dx. My onc says it too.  Even my current BS said that pathologists give a lot of 2s, and many fewer 1s and 3s, because it is the most conservative call. On the Genomic Health website there used to be a graph that showed a difference between grade "calls" from the local pathologists, and the larger institution when a second opinion was requested. Often the larger institution "downgrade" the grade. That is the one thing I regret is not having my path sent for a second opinion. However with this stuff, it seems that the answer to one question begets another question . . .

     
  • farmerlucy
    farmerlucy Member Posts: 596
    edited November 2013
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    Doxie - We were posting at the same time! It's those "great minds think alike" thing! You are so right. At some point you just have to move on.

  • jojo68
    jojo68 Member Posts: 336
    edited November 2013
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    Hmmm My team never ordered an oncotype test...guess I should have pushed for it?  Would they have done it and not told me?  Would it be on my path report?

  • pupmom
    pupmom Member Posts: 1,032
    edited November 2013
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    Jojo68, the Oncotype test is not done for people with over 3 nodes. From what I understand, chemo is a given at that point.

  • littlemelons
    littlemelons Member Posts: 23
    edited November 2013
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    I too have heard that grade scores are fairly subjective depending on the pathologist interpreting the tumour sample.  I am not surprised that second opoinions yield different grades. Saying a tumour is grade 1 or grade 3, i.e slow growing or aggressive, is taking a more definite stance so grade 2 is safer (as in cover your a$$) for the docs.  As I mentioned in an earlier post I am a high grade 2, with scores of: tubule formation 3, nuclear pleomorphism 3 and mitosis 1 for a total of 7 out of 9. I am wondering the different significance of the 3 components.  farmerlucydaisy, as you mentioned, the oncotype seems to trump grade now.  Unfortunately it is not routinely done here in Canada. I asked my MO about it and he said it wasn't necessary. How significant is the Ki-67?  I believe that Ki-67 is related to to the growth rate of the cancer cells, so is that related to the mitosis level in the Nottingham scale, i.e. lower is better?  That book by Dr. Hollingsworth sounds very interesting.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited November 2013
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    LittleMelons - He is an interesting fellow, but the book is a little out-of-date. He does have some interesting articles at http://www.breastmrioklahoma.com/.

    The Ki-67 is another one of those question marks for me. My onc doesn't seem too concerned that mine was high at 22%. I know that it is one of the measures in the oncotype dx. I don't know if the Ki-67, too, is subjective to the pathologist.

    It amuses me that I KNOW that all the "good" reports about the tumor are correct, but I question any of the "less than good" ones! Guess it is just human nature.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    FYI: Tumor grade is bases on 3 features:

    • Tubule formation: how much of the tumor tissue has normal breast (milk) duct structures
    • Nuclear grade: an evaluation of the size and shape of the nucleus in the tumor cells
    • Mitotic rate: how many dividing cells are present, which is a measure of how fast the tumor cells are growing and dividing


    source linky

  • violet_1
    violet_1 Member Posts: 335
    edited November 2013
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    Dr. Susan Love DID a blog post rebuttal of sorts about the news info. on the news woman who had that mammogram. ..and the misinformation that is often touted about mammograms being the lifesaving Be All that they're not...

    I posted in her comments.  Sorry, I can't link from my cell phone.

    But go see...;)

    Vio

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    My original biopsy came back as grade 3, but my mastectomy pathology came back as grade 2. I couple of the features changed, the one being most interesting was that my mitosis score went from a 3 to a 1? What the heck. My MO also said that it is very subjective. My Ki67 score was also high. I don't know how high because it just said >20%. I've been meaning to ask, but really, what am I going to do with that information now. My oncotype score was "low" so. like farmerlucydaisy, I'm going to stick with the good reports and question the bad ones! Loopy

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    SusansGarden typically the most accurate pathology is from the surgery sample and not the biopsy sample.

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    That's what I've heard too, lago. I also like to pretend in my mind that since my surgery was 2 months after my biopsy, I was really cognizant about eating healthy, exercising and took extra supplements, and I obviously downgraded that tumor on my own. ;)

  • littlemelons
    littlemelons Member Posts: 23
    edited November 2013
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    SusansGarden - That's interesting that your Ki-67 was high, but your mitosis score was 1 (at least after that great diet and all that exercise lol).  I thought there would be consistency between the Ki-67 and mitosis scores since they both relate to the rate of cell division/proliferation. Also strange that your Ki-67 would be high, but the oncotype score low, since again I would think they would be related.  It's like, the more you know, the more you don't get. I was kind of excited about my mistosis score of 1, but maybe I shouldn't be.  It's like Boo tubule formation, Boo nuclear grade, Yay mitosis.

    Overall, I figure I am getting good care and what will be will be. This bc has caused me to get off my butt and go places, do things and in general spend more money.  So that's good (well not for my bank account).

  • SusansGarden
    SusansGarden Member Posts: 754
    edited November 2013
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    My high ki67 score was on my biopsy pathology with the mitosis of 3. I saw no mention of Ki67 on my surgery pathology (that had the mitosis score of 1). So maybe the first reading was wrong? But they did find central cell necrosis which is indicative of a more aggressive tumor.


    I'm also wondering about the fact that the radiologist took 4 core samples at the biopsy (because she was so sure I had cancer she wanted to not miss anything). My surgery pathology listed my final tumor size as 1.4cm. I'm wondering how much of the tumor was taken out with four core biopsies? And maybe all that was left was the less aggressive part? The surgery path did say it was 25% DCIS.


    Or maybe the 4 biopsy stabs killed my tumor....along with my supplements. ;)

  • gildedcage
    gildedcage Member Posts: 68
    edited November 2013
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    Thank you, Susansgardens, for starting this thread. Like you, I'd been reading some articles lately that suggested the 20%-30% recurrence rate for even stage 1 cancers (what freaked me out the most was the one in the nyt magazine last month) and started to feel really despondent about it. It's so hard to synthesize all this information together and figure out what's what. I had a high oncotype score of 34 and was told by a second opinion oncologist (who really wowed me) that there was a 70% chance that lumpectomy alone "cured me" of cancer. I'm getting chemo (half way done), radiation and hormonal therapy to reduce my risk further and he indicated that those treatments would add on another 15-20% of recurrence reduction. That leaves me with with somewhere between 10-15% recurrence risk. Cancermath gave me a 5-10% risk of recurrence within 10 years. These numbers are far less than the 20-30% recurrence risk numbers (at least to my mental health, they are) that I've been seeing in the media. I've found this all very, very confusing and scary. But I appreciate the point that a number of people brought up (including Beesie who has such great sense about all these things) that there are a number of X factors. I read somewhere not too long ago that 30% of people stop taking Tomoxifen before the recommended 5 year point and never complete that particular treatment. I'd imagine that increases recurrence rates for those folks. How many people make significant lifestyle factors that reduce risk, such as weight loss, exercise, switching to natural products, blah blah, blah and how much does that impact the total recurrence rate? We all know that some people aren't able to sustain those changes and how much higher risk are they, if any? What about the folks who have a genetic mutation that they haven't "discovered yet" (my genetic counselor said that there are about 25% that are still unknown) - are they destined to have more recurrences that everyone else? What about advances in new treatments, like the new targeted therapy for HER+ cancers that just came onto the market a couple of weeks back? How will that impact survivability for those taking it? It's such a nuanced and ever evolving issue. I don't know that we will every be able to get a real, true idea of what our cancer recurrence risk is because of all those X factors. All we can work with is an estimate. I wish it were different but it's starting to look like I'm just going to have to learn to live with a certain amount of mystery around this whole thing. I'm going to have a new conversation with my onc about this next week but I thank you guys for taking the time to break it down and really look at it. It's helped me, anyhow.

  • [Deleted User]
    [Deleted User] Member Posts: 814
    edited November 2013
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    gildedcage, I read that quite some time ago about 30% of woman quitting Tamox. You are right. There are so many variables in this it is virtually impossible to accurately nail down. Then take into account other environmental things things not mentioned.

  • minustwo
    minustwo Member Posts: 13,162
    edited November 2013
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    Whoa - Glad to find this thread but I need to read more carefully. Thanks Susan. Thanks Lago. Both BS & MO said I didn't need oncotype DX with the initial DCIS diagnosis back in 2011 or with the recurrence - Stage 3 IDC this spring. Now I wish I had that number


    I'm one that wants to know everything. But then I agree with several of you, I want to sort it out & make my choices and move on. Unfortunately each step has found some 'new' reason that I need more or different treatment - the latest being the unexpected tumor size discovered during axillary node dissection surgery after initial chemo - so now more chemo


    RE: the new HER2+ targeted therapy, Perjeta, I've had 6 tx along w/my initial chemo. I don't know whether I'll opt for more Perjeta with the continuing Herceptin after this new AC chemo is done. One of the SEs is neuropathy & mine's already bad.


    I'm all for quality of life over quantity at this point so percentages are important to me. Choices, choices. Trying to figure out whether to do rads in 2014. 30% for recurrence for 2 more years is unacceptable to me - since I've already had 100% recurrence in 2 years. Maybe 30% recurrence for 5 more years?


    Thanks ladies for all your input. I'll be studying.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    MinusTwo The nueropathy is from Taoxotere (or even worse with Taxol). It does resolve for most folks that have been treated early stage. I will admit that my left heel is still a bit numb and will not be resolved because it's been over 2 years. Yeah, it can take that long. I haven't heard nueropathy associated with Herceptin. It is listed as a SE of Pejerta but be sure it's associated with that and not from taking one of the taxanes. What does your onc say about this? Is it getting worse?


    They do not do oncotest for those with node positive and/or HER2+. I had no nodes but because I was HER2+ and a tumor over .5cm (actually much larger) it was already established that I would be getting chemo with Herceptin. No need to waste money on an expensive test to confirm what was already a given.

  • pupmom
    pupmom Member Posts: 1,032
    edited November 2013
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    I just want to clarify something. Oncotype can be done with those having 3 or less positive nodes. I had 2 positive nodes and got the test. My score came back 14, so no chemo for me.

  • lago
    lago Member Posts: 11,653
    edited November 2013
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    Yorkiemom you are correct. That did change in 2012. But it still isn't used for HER2+ because as of now Herceptin seems to be more effective with chemo.

  • pupmom
    pupmom Member Posts: 1,032
    edited November 2013
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    Lago, yes that is my understanding also. Her+ seems to always get chemo, unless the patient refuses it, which I have seen happen here.