anyone want to weigh in on my situation??

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jpmercy
jpmercy Member Posts: 189
edited June 2014 in HER2+ (Positive) Breast Cancer

hi ladies, i was wondering if anyone is in a similar situation. i started off original dx with DCIS grade 3 multifocil BMX on Sept3 final pathology showed Grade three multifocil microinvasions and a 2.5mm tumor that is HER2neu +3 and grade three 40% ER/PR anyway i jsut turned 30 so im confussing to my oncologists and ive seen a few one at a major cancer institute. they feel like if i was 55 they wouldnt treat but they are so scared of leaving me with nothing bc of a few studeis from australia and from UCLA that claim distant recurrance is possible.  they are recommending a year of herceptin and four doses of light chemo with taxol and something else but i cant remember the name  spread out over 12 weeks anyone go this route for such a small IDC? i have an 8 month old baby and i feel like ill through anything at this at this point i just want it gone! and im hoping to eventually have another baby lots of wondering and worrying about what lies ahead any insight would be great!!  also what exactly does HER2 +3 mean? thanks ladies!

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    HER2+ is usually associated with a fast growing aggressive cancer. That's probably why we both have grade 3 tumors. In the past HER2+ tomors had a higher chance of metastasis but with the drug Herceptin our prognosis is much, much, much better!

    If you have an HER2+ tumor it is treated with Herceptin AND chemo. They have found they get much better results with the Herceptin if it is given with chemo. This is why your are getting chemo. Even with something as small as yours this seems to be the best route survival.

    You're going to be OK. I'm doing 6 rounds of chemo but I'm a stage IIB. Of course Herceptin for a year and hormone surpression for 5 years after chemo. (Not sure about radiation yet).

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  • NonniO
    NonniO Member Posts: 31
    edited September 2010

    Jennifer,

    I'm assuming that you have another appointment with your oncologist - make sure he/she spends some time answering all your questions until you're satisfied you understand it all, especially which chemo they reccommend.  And it's also a good idea to bring along a family member or a friend so that they can help remember things that you may be too freaked out to!

    I was also HER2+ and I received TCH (taxotere, carboplatin & herceptin).  Taxol is in the same family as taxotere.  Like Iago, I too had 6 treatments of TCH and then continued herceptin for the full year, but my tumor was 4.6 cm.  I believe that there was a study done that supports giving chemo to small HER2+ tumors like yours, but I can't remember the details of it.  Maybe someone else here online can provide the link.  I think you'll do just fine with the light duty chemo - I did okay with mine and I also had radiation afterwards, something you won't have to worry about. 

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  • lago
    lago Member Posts: 17,186
    edited September 2010

    Sounds like NonniO and I have the exact same treament… but we are also the same stage.

    I believe there have been more than one study that supports earlier stage HER2+ patients should get chemo/Herceptin. I feel bad for those women who's oncologist don't treat them this way.

    And if I were 55 and with your diagnosis I would want the same treament. I'm almost 50 and trust me I'm still pretty young.

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  • Kadyann
    Kadyann Member Posts: 53
    edited August 2013

    Hi everyone.  I am faced with a strange situation too as I am actually a grade 1 with a very low mitotic rate and her2+.  Because of that TCH regimine has been recommended even though tumor was less than 1cm.  I am also very puzzling to the doctors and it is hard to know what to do.

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  • nobleanna007
    nobleanna007 Member Posts: 641
    edited September 2010

    If you are Her2+ I say full treatment!!! If your only slightly I would have another test. This is a aggressive form and nothing to fool around with whether you have a small tumor or large. Of course just my opinion!!!! I have read up on it and its a nasyt protein that invades us.

    Good-luck!

    B

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  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2010

    I was stage 1 and wouldn't have passed on chemo even if my tumor was less than 1 cm, Her 2 is so aggressive and Herceptin offers chance of a cure.

    There is a study by MD anderson that looks at Her2 tumors under 1cm that did not get chemo, nor Herceptin, it was a retrospective study. It showed that stage 1 Her2 tumors less than 1cm has (don't' quote me) something like 25 percent recurrence rate. You will have to pull up the study for exact figures but it was high.

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  • jpmercy
    jpmercy Member Posts: 189
    edited September 2010

    thanks ladies i agree and im glad my oncologist is taking me seriously. back on thursday and friday for final plan.ugh going ot be a long year but well worth it to be sure this is gone!!

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  • NanaA
    NanaA Member Posts: 293
    edited September 2010

    I had a small tumor and onc did not even consider not doing chemo when it was her2+.  He had me do 12 weeks of weekly taxol which are smaller doses than the 4 done every 3 weeks.  They started the herceptin with the first taxol and I continued it every 3 weeks for the year.  I am now 1 yr and 9 months from diagnosis and doing OK.  Just had my 3 mo checkup last week.  After the next one we go to every 6 mo.  I did not even lose all my hair with the taxol it just thinned a little.  You can get thru this.  I also did rads since it was only a lumpectomy.  Best wishes  Annette

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  • NanaA
    NanaA Member Posts: 293
    edited September 2010

    I had a small tumor and onc did not even consider not doing chemo when it was her2+.  He had me do 12 weeks of weekly taxol which are smaller doses than the 4 done every 3 weeks.  They started the herceptin with the first taxol and I continued it every 3 weeks for the year.  I am now 1 yr and 9 months from diagnosis and doing OK.  Just had my 3 mo checkup last week.  After the next one we go to every 6 mo.  I did not even lose all my hair with the taxol it just thinned a little.  You can get thru this.  I also did rads since it was only a lumpectomy.  Best wishes  Annette

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