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

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  • debiann
    debiann Member Posts: 447
    edited August 2016

    I'm her2+ so I didn't have oncotype test. One of those "lucky" ones who didn't have to think too hard about doing chemo.

    But I'm curious as to what information the oncotype test tells you. Does it tell you how effective chemo will be in killing your type of cancer cells or does it give you your risk of recurrance with and without treatment?

  • BarredOwl
    BarredOwl Member Posts: 261
    edited August 2016

    Hi cp418:

    The 2016 ASCO biomarker test guideline is not in agreement with the current NCCN guideline for breast cancer (Version 2.2016) in all aspects. I note however, that even the NCCN guidelines treat the use of the Oncotype test for invasive disease very differently in the node-negative versus node-positive setting.

    When the 2016 ASCO guideline first came out, I commented that the distinctions made in the ASCO Guideline seem nuanced and the brief explanations densely packed, and recommended patients discuss it with their medical oncologists to ensure proper understanding.

    The ASCO guideline, like all such documents, is also a snapshot in time, and may not reflect consideration of all available studies to date for any particular test. For example, it states:

    "A literature search and prospectively defined study selection sought systematic reviews, meta-analyses, randomized controlled trials, prospective-retrospective studies, and prospective comparative observational studies published from 2006 through 2014."

    A number of studies have been published since that date applicable to Oncotype, MammaPrint and other tests. Because of these considerations, patients interested in a test like OncotypeDX or MammaPrint should always seek case-specific expert professional advice from their Medical Oncologist, to ensure consideration of the current state of clinical validation with respect to their particular circumstances and whether such tests may provide useful information.

    BarredOwl

  • lisey
    lisey Member Posts: 300
    edited August 2016

    debiann, it tells both the overall recurrence rate with tamoxifen alone, as well as the percentage of improvement in that rate with chemo. My score was a 20, with an overall 13% chance of distant recurrence in 10 years, and 10% chance if I took tamoxifen and chemo. So 3% on chemo... which isn't great considering.

    Also the mammaprint will test all four types of tumors, including her2, and tn...

    Adding I'm the gal who is betting on science in 10 years a few pages back... I think we are nearly there.

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited August 2016

    Since I've been on this Forum since late 2008 I have seen many, many new advances to treatment plans. Though I'm sure these were quietly available in places, they became common knowledge to the ladies here and we began to see a lot of changes in treatments. Herceptin, Oncotype, Mammaprint, ki67, Luminal A&B differences and even the test to see if your body is actually using Tamoxifen properly (can't remember that one...) and so much more. Before all this (and still happening all over) women were given lumpectomies or masts, then rads and chemo with 5 years of Tamoxifen. No thought to the individual and how her body was going to react - or not - to the plan.

    I think of chemo as doing more damage to organs than creating new cancers. I've lost a number of friends here on bco to heart, lung and other organ damage...

  • KBeee
    KBeee Member Posts: 695
    edited August 2016

    Lisey, I think it would be very rare for any MO to order Mammoprint test on a triple negative patient since chemo is the only option available to them. It also is generally not used for HER2 positive patients because of the need for Herceptin (which is generally initially given with chemo). I believe (someone correct me if I am wrong) it is for ER positive, HER2 negative patients. The advantage is that it tells you high or low risk, and has no gray area.

  • jojo9999
    jojo9999 Member Posts: 52
    edited August 2016

    I am going to chime in. I was node positive (1 out of 4, micromet, 2mm). I had the Oncotype test done, and got a 4. The chart that was given in the score report is labeld "Breast Cancer Report - Node Positive". Prognosis and Chemotherapy Benefit: 5-year risk of Recurrence or Mortality After 5 years of Tam" shows that scores below 20 have a higher risk if Tam+Chemo, lower risk with just Tam. Can anyone explain this? Here is a snap shot of the relevant page of my report - the score isn't shown, but the 7% and 10% are what I get with a score of 4. You can see that the Tam+Chemo is above the Tam line for scores less than 20. I really don't know what to make of it. can't recall my MO's explanation. at the time i was just so happy with the score, but now I wonder how meaningful it is.

    image

  • lisey
    lisey Member Posts: 300
    edited August 2016

    KBeee,

    There are MANY reasons why one would want to find out their molecular subtype, no matter if they choose chemo. Honestly different subtypes need different chemos. Articles on Triple Negative show there are at least 6 different subtypes with different successes on different chemos. In addition, Blueprint (a part of the mammaprint suite) offers better subtyping of TN and HER2, etc. so it offers further clarification. http://www.medicalnewstoday.com/articles/230206.php

    ____________

    However, there is a lot of interest in trying to determine different subtypes of triple negative breast cancer, and one subtype that is often used synonymously with triple negative breast cancer is basal-like cancers. Not all basal-like cancers are triple negative, however, and not all triple negative breast cancers are basal like. The reason for mentioning basal-like cancers is that they tend to express epidermal growth factor receptor and cytokeratin 5 and 6 are essentially the hallmarks of the basal-like subtypes. However, in practice, they're not routinely used because we don't really change our treatment based on whether a patient has the basal-like variety of triple negative breast cancer or just regular triple negative breast cancer.

    See here first question:https://www.med-iq.com/files/noncme/FacultyQandA/TNBC.html

  • KBeee
    KBeee Member Posts: 695
    edited August 2016

    Interesting. Hopefully the Blueprint test becomes standard practice for all TNs soon.

  • gerrib
    gerrib Member Posts: 60
    edited August 2016

    Thinking positive -'I think I will get mets'- probably because I am a pessimist. After having a 2nd primary have become more so. Also from reading on the Luminal A luminal B thread my PILC was probably luminal B which seems to be a bad omen. As far as pat downs -no pat downs detected my re-occurrence in other breast. Also I didn't have chemo. However I am not dwelling on it just won't be surprised if I get mets. 2nd opinion MO gave me a 30% chance or distant recurrence in next 2-3 years which I think is pretty high.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2016

    i believe the anastrozole will help you better than the tamoxifen.

  • Momine
    Momine Member Posts: 2,845
    edited August 2016

    Jojo9999, yes, the reason is that the chemo carries a mortality risk of its own. So, if it only reduces your cancer mortality risk by 1-2 percent, yet carries a mortality risk of 2-3%, then you are, statistically speaking, better off not doing the chemo.

  • chisandy
    chisandy Member Posts: 11,408
    edited August 2016

    jojo, could it be that in tumors with scores below 20, there is a lower proportion of fast-growing cells that would be vulnerable to chemo, so that adding chemo on top of tamoxifen might cause life-threatening-or-shortening events that would not occur with tamoxifen alone (notice the graph says “recurrence or mortality”)? The rationale would be that with a relatively indolent cancer, chemo would cause more problems than it solves. But once the scores top 20, there are likelier to be enough fast-cells vulnerable to chemo so that adding it would confer a benefit over tam. alone.

  • barbe1958
    barbe1958 Member Posts: 7,605
    edited August 2016

    Gerrib, the stat your onc gave you looks surprisingly like the title of this thread!

  • Momine
    Momine Member Posts: 2,845
    edited August 2016

    Gerrib, I don't know what your menopausal status is, but you should discuss the possibility of using an AI instead of tamox. AIs are more effective at blocking ILC. Because I was on the verge of menopause anyway, we took out my ovaries, so I could go straight to an AI. That is fairly extreme, I know, but my doc was in favor.

  • vlh
    vlh Member Posts: 773
    edited August 2016

    KBeee, I've been surprised that per the UK Predict tool, chemo would only improve my 5-year survival odds from 78% to 86%. I've been trying to pin down the source of the statement, but know I saw in one study that 30-40% of Triple Negative Breast Cancer (TNBC) patients don't respond to chemo. The MO didn't mention the Mammaprint test, presumably because I'm grade 3 TNBC, but I'm experiencing a lot of internal conflict.

    I've noticed some suggest that choosing chemo is easy with TNBC because it's aggressive & chemo is the only systemic tool. For me, it's not at all easy because of all the potential side effects of chemo, some permanent or even fatal. The statistical odds of the latter problems may not be large, but I've already "beaten" the odds as a 62 year old white woman getting TNBC since it is more commonly seen in younger African American or Hispanic women and is often associated with a BRCA gene. If you get TNBC at my age, genetic testing isn't even offered since it's presumed that it's not inherited.

    I worry that the treatment itself will kill me or, worse, leave me debilitated (congestive heart failure, amputation from infection related to the loss of toenails, severe neuropathy, etc.) Given that TNBC recurs / metastasize so quickly (my MO mentioned 15 months), I worry that I'll spend 8-10 months of my remaining life in treatment & deplete my home equity paying for it only to have the chemo fail. I've already wrestled with this when initially diagnosed with HER2 positive BC. With great trepidation, I passed on neoadjuvant chemo / targeted care only to have the type changed to TNBC based on the solid tumor pathology. It would be helpful for me to know my likely rate of recurrence although perhaps it would only further muddy the waters. Where is a crystal ball l when you need one??? SickTired

  • jojo9999
    jojo9999 Member Posts: 52
    edited August 2016

    Momine and ChiSandy, what is surprising is that the same chart for node-negative cancer does not have the same shape, and I would like to know better how it is used for node-positive cancer. Here is a similar screen shot - top is cut off to remove identifying information, but its title is "Node-Negative" whereas the screen shot I posted above was for node-positive. Here we see that the Tam+chemo is never above the Tam only line, whereas it is for the node-positive graph.

    image

  • lago
    lago Member Posts: 11,653
    edited August 2016

    BosumBlues don't look back. Remember that Oncotype is a tool to help guide the decision. It's not a absolute tool from my understanding. Fairly reliable BUT all the other factors must be considered. My oncologist told me with my diagnosis 40% of the women didn't need anything more than surgery. For some reason in my gut I felt I was one of the 40%…but I didn't want to find out the hard way that I was dead wrong. I did the treatment and here I am 6 years later still NED. You could be one of the 3%. Remember chemo works well on grade 3 so I'm sure that was a big consideration.

    There are so many other things they may have looked at that you didn't know about. If you are hormone positive and overweight, that might have been another thing they were concerned about. We don't know your medical history but like I said I wouldn't look back.

    Lisey the risk of secondary cancers is very very low. So many drugs also have cancer risk associated with them not just chemo. Heart valve issues are associated with certain chemos, not all and Herceptin (only used for HEr2+ cancers). But like you said individual risk based on individual medical history should be considered. This is why what may be the right path for you might have been a bad path for BosumBlues. There is risk with everything in life. Even the food you eat might be contaminated and get you sick.

    Oncotpye Note that HER2+ patients, even if stage I will not get this test. Herceptin and chemo are a given unless your tumor is very very small. I was stage IIB, but still node negative. No oncotype for me.

    NCCN guidelines again are just guidelines/recommendations but not absolutes. This is why you need to see a medical oncologist. Otherwise a non specialist would be making all evaluations.

    gerrib your stat might be a bit higher than others due to the fact that you have ILC not IDC. ILC is more likely to recur than IDC BUT not so sure about the 30%. Seems high. Even cancer math gives you 10% chance of not surviving after 15 years (figured you did tamoxifen and now on Anastrozole). Granted that might be low due to this being your 2nd diagnosis but 30% seems much too high.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited June 2018

    Hi jojo9999:

    I am a layperson with no medical training and did not receive an Oncotype test. Therefore, the information below may contain errors of fact or understanding. The following is for your information only.

    I note for others speculating about possible detriment, that there are node-positive members here who received a Low risk score (< 18), but in light of all available information in their specific case at the time, received professional advice to have chemotherapy and did have chemotherapy.

    I would caution people against possible over-interpretation of the cross-over in lines on the graph on the node-positive OncotypeDX report. This graph is based on the results of one particular validation study conducted in node-positive patients. Overall (not broken out by specific nodal status), there were 146 patients with a "Low risk" Recurrence Scores (RS < 18), including 55 who had received tamoxifen alone and 91 who had received the CAF-T regimen (chemotherapy, followed by tamoxifen). As explained below, there was a low event rate, and large confidence intervals in the Low risk group, so there are some limitations inherent in these results. Very roughly, a confidence interval is a type of statistical indicator of the reliability of an estimate.

    Further Discussion:

    The node-positive report is quite different from the node-negative report, because it is based on a different clinical validation study done in node-positive patients, and this study used a different kind of clinical endpoint. Hence, the graph in the node-positive report provides information about the average 5-yr risk of recurrence or mortality after 5 yrs of tamoxifen as a function of Recurrence Score.

    The sample node-positive report includes additional information regarding the graph both above and below:

    Sample Node-Positive (1 - 3 N+) report: http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

    [EDIT: Be sure to select the appropriate tab and confirm the title of the report.]

    In the sample report, above the graph are explanatory remarks about the study that generated the information show is provided under the heading "Clinical Experience":

    "Clinical Experience: The following results are from a clinical validation study that included 367 patients from the SWOG 8814 study. The study included post-menopausal patients with N+, ER+ breast cancer who were randomized to either tam alone or CAF chemotherapy followed by tam (CAF-T). The endpoint for this study was disease-free survival (time to local or distant recurrence, new primary breast cancer, or death from any cause) and 5-year risks are presented. (1)"

    Below the graph is the citation for Reference 1, "Albain et al., Lancet Oncology (2010)".

    Please check that the content of your personal node-positive report to ensure that it is consistent with the above.

    I believe that "Albain et al., Lancet Oncology (2010)" corresponds to this paper, in 367 specimens from patients from the SWOG 8814 study:

    Albain et al. (2010): http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(09)70314-6/abstract

    A pdf copy of Albain is available here (scroll down): Research Gate PDF

    [EDIT: It appears that the pdf document is no longer posted at the above link.]

    You will see that the authors note several times that there was no "apparent benefit" of added chemotherapy in the Low risk group. However, in my layperson's reading, I saw no intimation that they considered the cross-over of the lines at the lower end of the Recurrence Scores to be meaningful.

    See Figure 3B, which is described in the text as showing that: "There was no apparent benefit for scores of less than 18 (figure 3B, stratified log-rank p=0·97; HR 1·02, 95% CI 0·54–1·93) . . ."

    See Figure 5, which "shows [Hazard Ratios] HRs for disease-free survival for benefit from CAF for the parent trial, the entire recurrence score subset, and then by categorised recurrence score."

    "There is no suggestion of benefit in the low-risk group overall or in the first 5 years. In the intermediate group, there might be slight benefit overall, but not in the first 5 years. Confidence intervals are wide because of small numbers of later events."

    See, Figure 6B, with a y-axis of "disease-free survival event by 5 yrs %." This graph appears to be the source for the chart in the node-positive report. The lower two lines appear to correspond to the dotted and solid lines in the chart in the node-positive report (Figure 6B, Turquoise line: Tam, 1-3 nodes; and Purple line: CAF-T, 1-3 nodes). In your node-positive report, additional lines representing 95% Confidence Intervals (CI) are also shown. Regarding the results in Figure 6B, the authors state (page 62, column 2):

    "Because the recurrence score has better short-term than long-term prediction, estimates at 5 years are shown in figure 6B. The treatments are equivalent up to a recurrence score of approximately 20, but diverge at higher recurrence score values."

    =====> Despite the cross-over you noted, the authors consider the treatments to be "equivalent" in the low risk group and up to around 20.

    In the Discussion section (page 63, column 2), it further states:

    "Our retrospective analysis included a subset of patients from SWOG-8814, although overall treatment effect and demographics were similar to those in the parent trial. In view of the low endpoint event rate, especially in the low recurrence score group, CIs were broad; therefore, estimated benefit of CAF at specific recurrence score values should be interpreted with caution. Whereas there was no apparent benefit from CAF in patients with a low recurrence score for all endpoints, the possibility of benefit cannot be completely ruled out."

    In the low Recurrence Score group, there was a low event rate, resulting is broad confidence intervals. So while a benefit of adding chemotherapy was not evident or detectable in this study, given these limitations, the possibility of a benefit from added chemotherapy could not be excluded.

    By my layperson's read, there is nothing here to suggest that these data were (or should be) viewed as indicating that adding chemotherapy is more detrimental than endocrine therapy alone in the Low risk group. This is particularly so when the authors characterize the treatments to be "equivalent" in the Low risk group (see above) and expressly stated that "the possibility of benefit cannot be completely ruled out."

    In this regard, the on-going and much larger RxPONDER trial is evaluating whether adjuvant chemotherapy is beneficial in patients with hormone receptor-positive, HER2-negative breast cancer with 1-3 positive lymph nodes and a Recurrence Score of 25 or less.

    RxPONDER clinicaltrials.gov entry

    The Genomic Health web-site also references this additional validation study, which included both node-negative and node-positive patients:

    "Prediction of Risk of Distant Recurrence Using the 21-Gene Recurrence Score in Node-Negative and Node-Positive Postmenopausal Patients With Breast Cancer Treated With Anastrozole or Tamoxifen: A TransATAC Study"

    Dowsett (2010): http://jco.ascopubs.org/content/28/11/1829.full.pdf

    Results from additional studies, including prospective studies, that included certain node-positive patients have been published. Any node-positive (up to 3 nodes) patient who received the Oncotype test for invasive disease, and is making a treatment decision must discuss the meaning of their personal report with their MO, to ensure receipt of accurate, current, case-specific expert professional advice, and consideration of all applicable factors and available clinical validation information.

    BarredOwl

    [EDIT: Updated link to 1-3 N sample report]

  • KBeee
    KBeee Member Posts: 695
    edited August 2016

    VLH, in many, many cases, surgery alone is all that is needed to keep cancer away forever. Since we don't know which people, chemo, rads, hormone therapy, etc. one of my chemo pals from 2013 was TN and could do only one round of chemo because her doctor thought she might not survive more. She's still doing great now with no recurrence. We all make the best decisions we can for our individual cases ... we do what we need to do... And many times that means no further treatment ... do and then plow forward.

  • gerrib
    gerrib Member Posts: 60
    edited August 2016

    Thanks Lago for replying hopefully to my post.

    Momine I am post meno. Now on Arimidex. ILC developed whilst on tamoxifen

  • vlh
    vlh Member Posts: 773
    edited August 2016

    Agreed, KBeee, but with both my IDC & DCIS being the highest grade, it's difficult to go against medical advice. My feelings about the risks and possible benefits change from moment to moment.

  • meow13
    meow13 Member Posts: 1,363
    edited August 2016

    As much as i hated anastrozole side effects i think it works even better than tamoxifen.

    My SIL developed uterine cancer after taking tamoxifen for breast cancer. As soon as they found uterine cancer they took her off tamoxifen. They think she was one of the unlucky ones.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2016

    Iago, why do you say ILC is more likely to recur than IDC?


  • KBeee
    KBeee Member Posts: 695
    edited August 2016

    VLH, these are such hard, gut wrenching decisions. Do what your gut tells you is right and do not look back. Just know that you made the best decision you could at the time and that is all we can ever do

  • Momine
    Momine Member Posts: 2,845
    edited August 2016

    Gerrib, got it. I was going by your signature

  • Momine
    Momine Member Posts: 2,845
    edited August 2016

    Shetland, it may have been shorthand for the fact that ILC is more likely to recur later (as far as I recall), although overall, I think the survival rates are similar if you match patients according to stage. Because ILC is more likely to be DXed at a higher stage, it can make it look like the survival rates are poorer than in IDC.

    I found this, for example:

    "A trend toward better DFS was observed for ILC patients. The 5-year DFS was 85.7% for patients with ILC and 83.5% for those with IDC (P = 0.13). This modest difference is not clinically or biologically significant. However, although ILC patients experienced recurrence less frequently than did IDC patients during the first few years after diagnosis, the two DFS curves converged after longer follow-up (Fig. 1a). Despite having more favorable biologic characteristics, the 5-year OS was not better for ILC (85.6%) than for IDC (84.1%; P = 0.64; Fig. 1b). For node-negative patients, DFS and OS were very similar for the two histologic types." http://www.medscape.com/viewarticle/470725_3

  • lago
    lago Member Posts: 11,653
    edited August 2016

    ShetlandPony my oncologist told me that ILC is sneaky and more likely to recur when she was trying to get me to stay on AIs the first time I was having issues…

    I actually looked at her and said "well this is the first time I heard that I have ILC." Sure enough there was a mistake. They had switched the records from analog to digital since I was diagnosed. It also had a stress test in there that was actually for a 70+ yo man with my same last name! WTF be sure to check your health records. They can have mistakes.

  • vlh
    vlh Member Posts: 773
    edited August 2016

    Ohmigosh, Lago! Before digital was available, the imaging center "lost" my x-rays. There was an ice storm the day I was supposed to go back to have them re-done and, luckily, they found my films paperclipped to someone else's before I had to get smashed again. Now, it doesn't hurt, but it did back then so I wasn't a happy camper. That's trivial compared to an incorrect diagnosis & someone else's records intermingled with yours.

    Yes, KBeee, all we can do in the end is make what seems the best decision at the moment and hope for the best. I'm so very sorry that you recurred despite extensive intervention. {{Hugs}}

  • lago
    lago Member Posts: 11,653
    edited August 2016

    VLH my diagnosis initially was correct. Just someone put in the wrong info. Trust me this happens more often than you think. Everyone should take a look at their medical records.

    https://psnet.ahrq.gov/webmm/case/199

    http://www.scientificamerican.com/article/why-we-m...

    https://www.verywell.com/how-to-correct-medical-re...



  • vlh
    vlh Member Posts: 773
    edited August 2016

    Sorry, by incorrect diagnosis, I meant the record being wrong.

    Interestingly, I sometimes feel like the odd (wo)man out because I ask for a copy of my Xrays, pathology report, etc. Everyone is different, but I want to know what's in my records. My surgeon says she usually gives the surgical pathology report to the patient at the post-operative visit, but I want to see it in advance to review the findings, do research and prepare questions.