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

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  • Georgia1
    Georgia1 Member Posts: 188
    edited November 2017
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    BarredOwl, thank you so much for your time and your patience in explaining all of this. My Oncotype DX test has my rate of recurrence at 11 percent, which sometimes terrifies me and sometimes calms me. That is based, as I understand it, on a sample of women who had five years of tamoxifen, so my RO says taking it longer will improve the risk and also for some people taking AI will be better than tamoxifen. But all that said, risk is dependent on so many things. I had a malignant melanoma in my 20s, I drink, I don't smoke, I'm not overweight, I eat well, I'm white, I have good health insurance, I'm 59. No one else is exactly like me. So all we can do IMHO is try to stay positive and reduce our risk at the margins.

    Anyway, thanks for the info. and best wishes to everyone.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited March 2018
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    Georgia1, I also experience varying views of statistics from day to day. The [edit: first graph in the] node-negative (N0) Oncotype report provides a 10-year Distant recurrence risk (after 5 yrs Tam), as measured in a group of patients who were all assigned to 5 years Tamoxifen, as you have appreciated.

    BBINACT: Please note that the abstract refers in the alternative to: " . . the corresponding risks of any recurrence or a contralateral breast cancer were 17%, 22%, and 26%, respectively." Those figures are from Figure 4D and are a combined risk estimate, not purely contralateral risk. Specifically, this is a risk of "any breast cancer event", which the paper defined as "the rate of any breast-cancer event (distant recurrence, loco-regional recurrence, or contralateral new primary tumor, regardless of unrelated deaths)".

    The paper also comments: " . . the risk of contralateral breast cancer, which continued at a rate of approximately 0.3% per year after the cessation of endocrine therapy, independent of age or TN status."

    BarredOwl

    [Edited typo in Figure number]

  • brigid_to
    brigid_to Member Posts: 22
    edited November 2017
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    As the discussion has moved to include contralateral breast cancer I include this calculator that some may have missed when it was presented here a while ago:

    CBC Calculator

    Data tends to view things at 5 years and 10 years- interesting and somewhat disheartening to watch the risk of cbc increase as we move past that time period.

  • KathyL624
    KathyL624 Member Posts: 47
    edited November 2017
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    BBINACT..what was your oncotype? Remember that someone diagnosed 20 years ago wouldn’t have had that test. My doctors put a lot of value in that tes

  • TWills
    TWills Member Posts: 509
    edited November 2017
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    It was my understanding that my risk will go down over time, being that I'm grade 3 my reoccurance chance is the highest the first 5-10 years at 7%(it was 30% with no treatment) and would go down slightly as time goes on.

  • Molly50
    Molly50 Member Posts: 3,008
    edited November 2017
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    Those numbers for cbc don't apply to those of us with genetic mutations. I have a high risk of cbc thanks to check2. That's why I chose to remove my right, healthy breast.

  • lisey
    lisey Member Posts: 300
    edited November 2017
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    Our risk DOES go down over time, but what the paper is saying is every year you would add a % to the risk of recurrance. For example:

    If My 10 year risk is 15% of getting a recurrence, then on year 11 I add 1% to that and so one. So that on my 20 year my risk is 25%. Which makes sense that while the yearly risk go down (from say 3% the first year, 3% the second year, 2% years 3 and 4, 1.5% years 5-10), it still builds up over time. I'm 40, so if I live another 40 years - my risk would be 45% - assuming a 1% chance every year after year 10.

    Makes total sense to me. And I'm positive a cure is around the corner with immunotherapy so I'll totally take those odds.

  • scotbird
    scotbird Member Posts: 592
    edited November 2017
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    Statistics statistics.

    Someone told me the other day that for the UK population as a whole, the chances of living to be 100 years old are the same for a new born as they are for a 90 year old (apparently it’s about one in 3 in the UK and I’m guessing probably similar in the US).

    So if you are a baby born today you have a 2/3 chance of dying in the next 99 years, and a 1/3 chance of not dying before your 100th birthday, but if you are 90 today you have a 2/3 chance of dying in the next 9 years and the same 1/3 chance of making it to 100 as the new born.

    But these odds only apply to the population overall. They don’t apply to individuals. I know a few people in their nineties and also some small babies and just knowing them as individuals and knowing their personal circumstances makes you realise that the individual odds on them reaching 100 or not will be different to the 1/3 and 2/3 which applies to the general population. Genetics, nutrition, life choices, existing conditions, general health etc etc will all have the effect of nudging individuals towards the survivors or non-survivors groups in each case

    It all depends on how you look at it. We are each in a statistical sample size of 1 after all so looking at the odds overall is a bit limited. Having had a BC diagnosis reduces our odds of reaching 100 significantly which is annoying as I had always planned to die aged 110. I’m 51 now BTW.

    Sorry for rambling...

    X

  • Molly50
    Molly50 Member Posts: 3,008
    edited November 2017
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    BBINACT, for me personally my risk of a new cancer is 29% over 20 years. It doesn't predict recurrence.

  • HoneyBeaw
    HoneyBeaw Member Posts: 150
    edited November 2017
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    Solfeo

    Im very interested in seeing your test result, I had not idea this test was out there to be had .


  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    I was told by BS the CTC test can cause false positives and false negatives. Didn't know they actually test the cancer cells like in solfeo's case. CTC means circulating tumo cells. It can find cancer eleven months before it shows up in symptoms. There's a study. I brought it to my BS I wanted itfor my occult primary. He said he would take a blood sample at surgery, three surgeries later, no test. I was lied to from the begining. He left the study on the exam room counter, that should have told me his intentions.

  • muska
    muska Member Posts: 224
    edited November 2017
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    Hi solfeo, my understanding of CTC is that is still rather controversial and as you pointed out providers don't know what to do about the rresults. Having some circulating cancer cells or not having any probably wouldn't change your treatment at stage II. Might be different for stage IV management though. That's my understanding but I haven't researched this test. My question is, how do you and your providers use the results of the test?

  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    BBINACT you mean IV vitamin C?


  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    Solfeo, no I wanted to know what kind of Vitamin C BBINACT used but thank you for the adiditional information. How much did the CTC test cost you?

  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    I think what you've done so far is OK. You're IA right? With nearly five years of AI You're fine w/o chemo in MHO.


  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    Thanks Solfeo, it’s all good. $800 not too much if anyone thinks they need it, it was helpful for you. I’ll try to find the study I gave to BS

  • lisey
    lisey Member Posts: 300
    edited November 2017
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    Solfeo,

    I read through your report.. that is crazy fascinating how much detail they got with just a 10mil vial of blood. I'm confused about 1 thing though... They tested a ton of chemos on your stray cancer cells floating in that blood. It seems to me, in order to know how effective each chemo would be, they'd need multple cancer cells for each test. How many cancer cells did they find in that 10ml of blood? It's a little concerning that they could isolate so many right? Am I misunderstanding how they tested?

  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    Wowee that's quite a report! Solfeo. Why do they playguessing games with treatment when they can do this!


  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    : ) you mean the BS? I haven’t seen him in nearly two years. I should email him and ask where my results are

  • farmerlucy
    farmerlucy Member Posts: 596
    edited November 2017
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    sofeo - that is fascinating! Thanks for posting!

  • HoneyBeaw
    HoneyBeaw Member Posts: 150
    edited November 2017
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    Sofeo

    I looked at the test result but have no idea what they are saying So what does it tell you about your situation.

    Are you glad you had the test or did it just cause more fear and uncertainty for you .

    kind regards

  • NicolaSue
    NicolaSue Member Posts: 18
    edited November 2017
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    I get the stats as I have advanced research training. Key for me is that there are some significant limitations of the study. Firstly not all the women completed the hormone therapy and secondly the diagnosis and initial treatment was now some considerable time ago so if the study were done now and analysed in 20 years the results might be very different. I've read some of the on-line comments in other fora from the experts and I don't think people are overly impressed by the study.

  • Mommato3
    Mommato3 Member Posts: 468
    edited November 2017
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    Did this study say approximately how many women didn't finish treatment? That is my concern with looking at the stats. What if only 50% continued taking the AI for the full five years?

  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    Barreled Owl answered that question, go back and read allher posts.

  • NicolaSue
    NicolaSue Member Posts: 18
    edited November 2017
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    My memory is that (I don't have the paper in front of me to be sure) up to 30% of women may not have completed the hormone therapy. I think the bottom line is that they don't know for sure how many didn't complete. I've also read elsewhere that numbers that SAY they complete will always differ from those that do for the obvious reason that it takes a brave soul to say they are not complying and many will not comply but say they are.

  • meow13
    meow13 Member Posts: 1,363
    edited November 2017
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    I don't have a problem at all with telling my doctor what I will or won't do for treatment. The first time I told my mo I will not do chemo, do you still want me as a patient? He said yes. I said no to AI treatment after 4 years of it. As far as I know I am not included in any statistics.

    ALL of the doctors I have asked, "How did I get this cancer, they all replied we don't know". I don't blame myself for getting the disease.

  • Mommato3
    Mommato3 Member Posts: 468
    edited November 2017
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    Marijen, Thanks for your help? Just so you know, I've read every post in this thread. I even went back and reread all of BarredOwl's posts but didn't see it.

    NicolaSue, I appreciate you taking the time to respond. The number of women that actually completed their treatment is important to me. The recurrence rates in years 5-20 could be greatly influenced by the number that finished or didn't finish treatment.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited March 2018
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    Pan Meta-analysis (2017), http://www.nejm.org/doi/full/10.1056/NEJMoa1701830

    For those who purchase a copy of the full paper, be sure to also download a copy of the Supplementary Appendix, which contains a large amount of data and information regarding the underlying trials.


    Types of Endocrine Therapy:

    There were a variety of endocrine therapy regimens included in this meta-analysis. There were 62,923 patients who were disease-free after 5 years and who were therefore included in the year 5-20 analyses. Per the Supplementary Appendix, among these 62,923 patients, the regimens were:

    (1) Tamoxifen only (66.2%);

    (2) an Aromatase Inhibitor ("AI"; 10.9%);

    (3) Tamoxifen and AI (a "switch" regimen; 22.5%);

    (4) Toremifine only (0.4%); or

    (5) Ovarian abalation or suppression (pre-menopausal; 2.2%).


    Adherence to Endocrine Therapy:

    Although trial participants were assigned to five years of endocrine therapy, some may have discontinued treatment early. Pan (2017) notes, "All the patients were scheduled to receive endocrine therapy for 5 years then stop, regardless of actual adherence."

    Regarding levels of adherence, there seems to be little detail. As quoted earlier in this thread: "First, the recurrence rates reported here are in women who were scheduled to receive 5 years of endocrine therapy, not in those who completed treatment. Only a few of the trials in our study provided detailed data with respect to adherence, but a substantial minority of women in trials of 5-year endocrine therapy did not complete their treatment.[2]"

    Reference 2 is the 2011 EBCTCG meta-analysis of about five years of Tamoxifen, which included some information regarding compliance in a subset of trials included in the 2011 analysis (citations omitted): "Six major trials described compliance with the tamoxifen allocation (75% in NSABP completed ≥3 years; and 89% in GROCTA, 78% in IBCSG, 82% in ICCG, 69% in NCIC, and 86% in SWOG7 [weighted mean 82%] completed ≥2 years)."


    Chemotherapy:

    Some of the patients included in the Pan (2017) meta-analysis also received chemotherapy. However, the design of this study did not permit reliable assessment of the relevance of chemotherapy to prognosis after year 5.


    Specific Recurrence Rates Reported - Caveats and Limitations:

    The discussion section addresses various caveats and limitations of this work, which could have an impact on the accuracy of the specific rates measured. For example, had all patients received a full five years of prescribed therapy (which they didn't), it may have further reduced rates measured in certain time-frames. On the other hand, they had reason to suspect that there were some "unreported breast-cancer events" in this study.

    The "long follow-up means that most of the patients received the breast-cancer diagnosis well before 2000. Since then, the prognosis for women in particular TN categories has somewhat improved owing to earlier diagnosis, more accurate tumor staging, and better surgical, radiation, and systemic therapies." This means that patients diagnosed today and treated in accordance with current standards of care may fare somewhat better than the relevant averages reported for this study population.

    BarredOwl

  • marijen
    marijen Member Posts: 2,181
    edited November 2017
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    Mammoto3, it was the last post at page 59. But BarredOwl just included the information again, above

  • lovelau
    lovelau Member Posts: 41
    edited November 2017
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    i had catscan and bone scan and my oncologist said the were "clear no.cancer" that sounds like cancer free to me,if i choose to believe it. I hope i can.

    Anotthet thing about cancer i met a lady who saud she had 6 yrars stage 4 breast cancer, then i found out she didnt have it in her breast but had it in her sternum. So no breast surgery, no chemo, no radiation. She takes some pills but not ai.

    Also i met a guy who got a lump on his head and that turned out to be lung cancer.

    Bless all of you and me too.