Triple Negative .. help

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Dleon24
Dleon24 Member Posts: 17
edited December 2019 in IDC (Invasive Ductal Carcinoma)

I was diagnosed with triple negative , I had a clean catscan from neck to pelvis, MRI showed a contained tumor in left breast , MRI and catscan showed no node involvement, I had everything done in 1 month , I had my lumpectomy done 1 week ago the tumor was 1.4 cm, my sentenial node was positive but showed no extra nodal involvement .My margins are clear , my tumor grade is 3 . Stage 2 . They are recommending 4 rounds of adryomycin , then 12 weeks of taxol , then 6 weeks of radiation , I'm still in shock I'm 48 have 3 kids and so afraid about all this . I'm researching about this and it sounds like it’s the worst cancer it is scary . Im going for a second opinion From an oncologist, here is my big question, i had the ck 25-29 cancer marker test done it came back 16 which means no indication of cancer , haven’t had any treatment it’s only a week out of surgery even. They still want me to go through all this treatment. Anyone have low cancer markers like this before treatment . Dr said have to because triple negative is very aggressive . There can stilll be very microscopic cells floating around . However when you have numbers like this doesn’t it mean your kind of in remission

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  • moth
    moth Member Posts: 4,800
    edited March 2019

    Chemo is pretty much routinely recommended for triple neg, esp for a younger woman like yourself because we can't rely on hormone suppression to keep our cancer from recurring. I don't think cancer tumor marker tests tell us much about how aggressive your cancer is & how likely to recur. Tests like the Oncotype do that but only for hormone positive cancer.

    The treatment you're describing is pretty much what i had last year. I fell pretty much back to normal now. If your oncologists are recommending it, I'd do it. It's not fun but it's doable and soon it's a memory. For me, it was important to do everything possible to reduce risk of recurrence.

    You can enter your stats & see the benefits of chemo for you here https://www.predict.nhs.uk/predict_v2.1/


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  • Dleon24
    Dleon24 Member Posts: 17
    edited March 2019

    I am going to do it I can’t take a chance , just wondering if anyone had low markers like this at the start of treatment . How do you feel? How was chemo ? I’m glad your ok , I have a hard time dealing with having to worry about reoccurance . I’m trying so hard but it’s all so new I’m so afraid

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2019

    Dieon24, a lot of doctors and even premier national breast treatment centers don’t run tumor markers because they are not reliable for a big percent of people

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  • Dleon24
    Dleon24 Member Posts: 17
    edited March 2019

    I read about them , when they are high they can present a false / positive .... but being low is not false . I read and asked my oncologist why they do this , they use it in correlation with other tests . A lot of Doctors use this to be able to tell if cancer is starting to come back , it may prompt a Dr to do more testing , I have several friends who that’s all their Drs do to keep an eye on them .

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  • WC3
    WC3 Member Posts: 1,540
    edited March 2019

    My cancer was triple positive but even before I started treatment, only one of my markers was elevated and only by a few points.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    In my case, low WAS false. At diagnosis, I had a raging grade 3 TNBC 3.8 cm tumor *and* a 3 cm lymph node-- and my cancer markers were also very low, like yours-- like a healthy person. They have never re-run them because in my case, they do not appear to mean anything.

    You are smart to do chemo, as TNBC is a virulent kind of cancer. It has a silver lining though. High grade TNBC often responds very well to chemo-- mine did!-- and if you get rid of it, after 3-5 years the rate of recurrence is very very low, almost zero. Unlike a lot of hormone sensitive cancers which can recur 5,10,15 years later.

    Even without any lymph node involvement there can still be stray cells that bypass the nodes and set up shop elsewhere. Good to throw everything at it now, and hopefully never have to deal with it again!

    Just looked it up: My CA 15-3 was 7.8, and my CA 27-29 was 16.8

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Hi Dleon24! We just wanted to welcome you to our community here. We know these early days and weeks can be confusing, but as many have mentioned here, chemo is pretty routine for TNBC. But as others have said, it is manageable! And worth it to keep your recurrence risk as low as possible. We're all here for you as you go through treatment!

    The Mods

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  • Dleon24
    Dleon24 Member Posts: 17
    edited March 2019

    Those blood tests , were they given before your tumor wasremoved or after ?

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  • Dleon24
    Dleon24 Member Posts: 17
    edited March 2019

    I have another question anyone who ha a lumpectomy ,,, how long after did you start chemo ?

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    My tests were before removal and also before chemo. I did chemo first, prior to surgery. So the low scores were while I had active cancer full blown in my system, which is why they can't be relied on for everyone.

    The recommendation is to start chemo within 30 days if you have surgery first. I think if you have chemo first they also want to do surgery within 30 days of finishing chemo, and radiation within 30 days after surgery too.



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  • Dleon24
    Dleon24 Member Posts: 17
    edited March 2019

    Anyone have pain under by their rib like tender after lumpectomy?

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited March 2019

    @DLeon24, while I didn’t have a lumpectomy, I did have mild rib pain after my BMX/reconstruction. Within a month or so, the pain and the discomfort had subsided. I hope you get relief soon.

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  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 43
    edited December 2019

    My mother stage 4 she have ca 15.3 very veryy high its 2432 ...................please any experience here any one have a very high ca15.3 and he s down like my mother she have 72 years and she can t take chimo she take armosin and she have 2 spot in his liver 1.5 mll any experience please

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