Curious about recurrence after Stage 1 diagnosis

noraLCIStoILC
noraLCIStoILC Member Posts: 57
edited June 2014 in ILC (Invasive Lobular Carcinoma)
Curious about recurrence after Stage 1 diagnosis
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  • noraLCIStoILC
    noraLCIStoILC Member Posts: 57
    edited December 2012

    Hello all,

    I'm curious about the recurrence after Stage 1 diagnosis (mine came about because of pathology following what was supposed to be prophylactic BMX). No node involvement. Tumor too small for oncotyping (3mm).

    I'm taking tamoxifen b/c the MO convinced us that there's a small chance that an ILC BC cell could be blood borne and not in the sentinel lymph node - we lost two people dear to us to metastatic disease.

    I see some women here talking about recurrence, but it seems that they were stage II or III at initial diagnosis; and that they often needed chemo & radiation.

    Just really curious

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2012

    Nora

    this is the $64,000 question.  No one really knows who will and won't recur.... I think it is really important to remember that recurrances are rare-even though they do indeed happen.  I had a lumpectomy, chemo and radiation 4 years ago and frankly, I consider myself cured.  I know it could come back, but I am living my life like it won't.... You are still in the early stages, even though the process is "over".  It took me about 2 years before I really started to be "myself" again..... 

    I am sure others will be along with even better info than me....

    best

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  • Crescent5
    Crescent5 Member Posts: 442
    edited December 2012

    Nora, I too had a PBM where ILC was found. I had two small tumors 4mm & 7mm. I had oncotypedx done, and my score was a 6 (yay!).

    So how often does this sh*t come back? I'm starting to think (and someone more knowledgeable than I, please correct or confirm) that most of the stats are based on info gathered years ago (no less than 10 methinks). I thought tamox was being used for people like us for 30 years, but I think I read that it really wasnt. So it's possible that the numbers the docs come up with in Adjuvant! online (why the exclamation point?) are over-blown based on old, less effective treatments.

    Old facts haunting us: ACS website says PBM can reduce your risk by 90%, but my BS said that's outdated. With better mastectomy techniques (such as coring out the nipples yuck), the risk is reduced 95-98%. I realize this isn't distant recurrence, but it goes to show how an outdated # changes things a bit.

    OK I had an arrogant onc tell me my chance of recurrence was 15% which I contend is BS. This was before oncotype score came back. I had another dr tell me 6-7% chance and then another one said 12% I think. Oncotype tells me I have a 5% chance as long as I stay on tamoxifen. But I workout 5-6 times a week, so that knocks it down ... yada yada yada.

    I tried to read reports, and seriously, I thought my brain would fry. So I came up with my own conclusion. Yes, there's a chance that our cancers can metasticize (sp?). It's a small chance, but it also happens to be smaller than the general population has of getting BC, so I think it's good. It is not impossible, but it's also not highly likely. One of my dr's told me she's never had anyone with a tumor less than 1cm come back. OK, so she's not the only dr in the world, but I liked hearing  that.

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