Confused by oncologist

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gooseberry
gooseberry Member Posts: 61
edited June 2015 in Just Diagnosed

I have IDC, paper says stage 1 (but surgery is 6/30, where you get official staging and such) So I have gone to all the appts. and met with the surgeon and radiation oncologist and they all talk like its removed, 6 weeks of radiation, then take that pill for hormone therapy. I am prog and etro +... and its all done. This is what they have all pretty much said is the norm.

So today I see the chemo, treatment, onocologist, cannot remember the official name and she is talking talking and says the her2 result is not back there was something a little (and she made a squeeky noise) with the biopsy places result so it is getting tested further and its not back yet BUT she is probably going to be recommending that I have chemo therapy... and she said for 5 or 6 months.

So is a positive her2 the only reason chemo would be recommended? I was caught off guard by this news and her even saying those words like stopped time for me. So of course, I have my questions 3 hours later here at home. It was my impression stage 1, no chemo, unless the her2 is positive. So now I am realizing I may have triple positive and I have no idea what that entails. I went looked and saw people talking about pet scans and getting sick on chemo, so I had to back the heck out of there. They only way I am getting through all of this is pretending it does not exist. Distracting myself. I cannot read to much further of whats in store or it will shatter my cocoon of protection (denial). So is there any other reason to get chemo besides her2+ or the surgery showing its in your lymph nodes????

Thanks for any info.

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  • PatRN10
    PatRN10 Member Posts: 332
    edited June 2015

    There are several factors, age, lymph node status, HER2, and the Oncotype test. (There is a nice info post about this in the resources) . Sometimes the Her2 COMES BACK "Equivocal" on the first test so they send it out for further testing to be more exact. This may be what was done in your case. It is a lot of info but take it one step at a time. Write down your questions for the doctor and call her back or ask the nurse at the office. Most of the time new patients are assigned a "Nurse navigator" to answer questions such as these or get the info from the doctor.

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  • ml143333
    ml143333 Member Posts: 658
    edited June 2015

    Gooseberry - Pat is correct.  There are other factors that go into chemo or no chemo.  Grade of tumor (aggressiveness) also plays a part in addition to age, lymph node involvement, HER2 ad Oncotype test.

    My IDC was stage 1, grade 3 with Oncotype of 23.  With all the factors, even though my Oncotype was in the grey area, we went ahead with chemo.  My husband and I wanted to throw everything we could at it.  I finished it up in April and am on an AI now and doing okay.

    Pat is also correct in that most hospitals have a Nurse Navigator that can help you with many questions and is a great resource too.


     

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited June 2015

    Gooseberry, maybe your experience was similar to mine? My surgeon's approach was to explain the odds, predicting a very high probability of surgery and rads, no chemo. The medical oncologist's approach was to kind of introduce me to, and prepare me for, the possibility of chemo, and to explain why it might be needed. Yes, my HER2 was also in question, as I suspect it might be for most of us. I am not sure whether this meant my initial numbers were wishy washy, or just that they waiting for the definitive (FISH) test. Obviously, until your pathology is complete, whether you might need chemo is anybody's guess. As it turned out, I did not need chemo, but was (sort of) grateful that I had been prepared for the possibility, so that it would be somewhat less of a shock if it turned out to be adviseable.

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  • windingshores
    windingshores Member Posts: 704
    edited June 2015

    Make sure your treatment is based on the HER2 test after surgery. I had a positive HER2 from the biopsy specimens because there was some DCIS mixed in, and DCIS is often (or always?) positive for HER2 and the tumor itself might not be. I went to a third opinion because I ended up with two equivocal IHC's, one positive and one negative FISH so I needed a tie breaker.

    As for throwing "everything you can" at cancer, the new philosophy that results from Oncotype and other advances is that that attitude can result in overtreatment. Low Oncotype, slow moving cancers may have low cell division rates and chemo does not work that well if cells aren't dividing quickly. Intermediate scores are still a problem: noone knows yet whether chemo is called for or not, and there is a trial, the TailorX, that may answer some of those questions this year.

    I started out with grade 3, high ki67 (proliferation), lymphovascular invasion and HER2+. I had my teeth cleaned three times because different MD's would tell me to get ready for chemo. I bought scarves and started cutting my hair. I ended up NOT doing chemo because my Oncotype is 8. Go figure. I had a retest (rare, but MD's thought it was called for) and it was 8 again.

    The point isn't just that I don''t need it. The point, apparently, is that if I took it, it wouldn't be that effective and in fact, Genomic Health's charts show increased mortality with chemo regardless of effect on cancer, for me.

    It is hard for me now NOT to do chemo because I want to do "everything I can" but I finally truly grasped the idea that it would not do much good at all, based on the biology of my tumor- regardless of grade, LVI etc. In fact, even if it had been node-positive, noone would have recommended chemo for me.

    Of course you are worried and this is supposed to be a helpful message, that it ain't over till you have all info, but it may also add to uncertainties so I apologize if the effect of my post is not as positive for you as I intend...


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