ONCOTYPE TEST and FISH TEST

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florida2015
florida2015 Member Posts: 186

Is normal to take so long to get these test results back. I have my lumpectomy done on March 2 and my follow-up appointment with the breast surgeon on March 7. At that time I was told my three nodes were clear of any malignancy. I find it unusual I have to wait so long to find out what my treatment is going to be the number is on the on oncotype test. My appointment is this Friday. Would any of you want to call the lab and find out your results before you speak to the oncologist. Waiting starting to really get to me

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  • doxie
    doxie Member Posts: 1,455
    edited March 2015

    Some MOs won't give that info out over the phone. You could ask. At least to make sure the results are in. My tissue didn't get sent to CA for the Oncotype until I started questioning why the results were t yet in. Can't speak to to the FISH. I think that is done locally or in house. Waiting is the worst part of this. Hang in there.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2015

    It seems unusual to me that Oncotype Dx testing would happen without definitive results from FISH testing.  FISH is to determine Her2 status, and Oncotype testing is not done on Her2+ samples.  Until the Her2 status is known Oncotype should not be done.

  • ml143333
    ml143333 Member Posts: 658
    edited March 2015

    My oncotype test came back in two weeks, but my FISH took 6 weeks.

  • knmtwins
    knmtwins Member Posts: 598
    edited March 2015

    See if your facility has a patient portal. Get an account and login to see if any of your reports are on there. If I remember, FISH gets sent out, so takes about a week. For me, my cancer diagnosis came about 24 hours after my core biopsy, the Her2 came a week later, but I don't think anyone told me or told me what that meant. Then 16 days later I met with the MO who told me HER2+++, that he had the tumor sized again based upon the MRI, not the mammo and US, so now it was over 2cm, putting me at stage II and I would need chemo since it was Her2+++. Mind you, getting it over 2cm, allowed me different therapies, but still. Threw me for a loop. No one had mentioned that.

  • florida2015
    florida2015 Member Posts: 186
    edited March 2015

    wow KN that is scary stuff. I hope I don't go in and get told my cancer is not as small as I originally was told.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2015

    Actually is is very common for cancer to be larger on final path than biopsy. I was glad I was warned to expect that.

  • florida2015
    florida2015 Member Posts: 186
    edited March 2015

    oh... well on my pathology report mine was smaller.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2015

    That is a good thing!

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015
  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited April 2015

    I had to wait 2-3 weeks for my oncotype score to come in and the MO would not give me the results over the phone. The only thing that changed on my final pathology was the grade of the tumor (I actually had 3 small tumors) it was upgraded from grade 1 to grade 3, which is the main reason the MO ordered the oncotype test and he didn't even order it until after I met with him for the first time. I knew hormone receptor status right away but had to wait a few days for the HER status.

    The waiting is the hardest part, hang in there!

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015

    Thanks finally got score of 19, and will do radiation and hormonal drug

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    I'm sure that's a huge relief!

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015

    Such a huge relief. I can finally breathe!! Thamks😀

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    I'll bet, Florida! Do you know yet which AI you'll be on? I hope it works out very well for you.

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015

    she mentioned. Anastrozale

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited April 2015

    Are you going to start it after radiation? I think that's usual but I'm not sure there's any particular reason for it. At this point I'd be afraid to stop Femara for the duration of rad.- have to ask my BS or MO about that, eventually.

    At any rate, enjoy your weekend knowing chemo isn't in the cards!

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015

    not sure yet. Thanks you enjoy too. I feel so good now there is a plan. Particularly one with no chemo

  • Shanann
    Shanann Member Posts: 106
    edited April 2015

    I had a lumpectomy, and am healing fine. I have IDC- I'm 51, and pre menopausal. My pathology report says I am stage 1A, grade 3, ER+ PR+, HER-, nottingham score 9, KI 67= 60%, and I'm waiting on the oncotype dx (genomic) test results. I was wondering if anyone with a grade 3 (aggressive) got a low number? I'm really scared of the thought of enduring chemo.

  • readytorock
    readytorock Member Posts: 199
    edited April 2015

    Shanann-

    I was grade 3 and my oncotype score was 19. I chose to do chemo even though I could have went either way. Glad I did! Chemo is scary, but wondering if I made the wrong decision for the rest of my life was scarier!

  • windingshores
    windingshores Member Posts: 704
    edited April 2015

    I am grade 3, high KI67 and low Oncotype score of 8. I am 95% estrogen positive. The discrepancy makes me nervous.

  • Shanann
    Shanann Member Posts: 106
    edited April 2015

    Thank you, Ladies (windingshores & readytorock!! I know everyone is scared. I will do the chemo if the Oncologist recommends it based on the results of the genomic testing. I will find out in about a week. It's just that I've been pouring over situations from countless ladies, but none that I've read quite match my pathology results with Stage 1A, but the high grade and the high KI 67 percentage. I was beginning to worry that the grade might be more important than the stage, but I think that's not the case. I'm not sure about how to figure out the estrogen/ progesterone percentage; I only know it's positive, and the doctor said that was a good thing. Boy! You start learning a lot during this waiting process, and still- things are murky and unclear. If my tumor feeds on estrogen is there something I should or should not be eating? And, if the cancer was not in the lymph nodes why am I worried about the cancer metastasizing? That's very scary!! So, does the Oncotype score tell if the cancer has/will metastasize or just show the percentage of recurrence?

  • florida2015
    florida2015 Member Posts: 186
    edited April 2015

    I am going to nutritionist tomorrow after radiation to ask that question about food and if I should avoid certain food.

  • edwards750
    edwards750 Member Posts: 3,761
    edited April 2015

    Shanann - it gives you a recurrence %. No way to know if it will metastasize.

    windingshores- my score was 11 - IDC, Stage 2, Grade 1. That is unusual for a Grade 3 to have such a low score.

    Diane

  • Shanann
    Shanann Member Posts: 106
    edited April 2015

    You're right. It gives the % chance of recurrence, but it also studies 21 genes and how they will respond to treatment, which is how they know whether we need radiation or chemo or both, right? So, it analyzes and predicts. I just thought since if they would treat us with chemo with a high chance of recurrence (could be same area, or in the brain, eye, liver, etc...) and, since the chemo works in the bloodstream to kill cancer that may have traveled elsewhere or be in the process of traveling elsewhere, isn't that metastasizing?. Otherwise, why would we take chemo? I guess I'm not understanding something. I mean, isn't the radiation more directed at killing the area where the tumor was in order to prevent recurrence in that same area; whereas, chemo is meant to go throughout the body and look for and kill it where EVER it might be because the high number suggests it? I'm sorry. I'm so new to this, and have so much more to learn. I'm a little slow too.

  • windingshores
    windingshores Member Posts: 704
    edited April 2015

    Oncotype test will tell you the percentage of Estrogen positive.

    The Oncotype company tells me 30% of low scores are high grade. But there are aspects of their test I don't trust (such as HER2) and I am troubled by the fact they won't reveal most test results or even the genetic components they test. Ki67 is one.

    My pathology results for biopsy and surgical specimen were different and my tumor is heterogeneous. I tried to have a retest of Oncotype because it was done on biopsy materials. My oncologist ordered this but would not advocate strongly for it. So I am changing MD's.

    I think it's scary that Oncotype trumps everything else. I found an MD who thinks for herself and is retesting some of my surgical results, particularly HER2, which was positive in biopsy and negative on surgical with two equivocals including 2+.

    All I can say is, I am glad I woke up and kept trying MD's: this is my 4th and I have finally found the right one.





  • Shanann
    Shanann Member Posts: 106
    edited April 2015

    Good for you to keep trying, and finding one you feel comfortable and confident with!! I see your concerns. I am concerned that my Oncologist, while seeming very compassionate, already told me I would be taking Tomoxifen, which must be standard at this point, I suppose. One of the side effects of this pill is ovarian cancer. I was reading that there is a drug (starts with an "A" can't spell) that does the same thing without that side effect, so I was questioning why the doctor was so adamant that I'd be taking it before my test results came back. I am happy for you, and I do wish you the best!!

  • windingshores
    windingshores Member Posts: 704
    edited April 2015

    After I posted I was afraid I sounded too negative. There are so many excellent doctors in this field. My case is a little unusual for a few contradictory tests.

    Tamoxifen is good if you are premenopausal, and the aromatase inhibitors (anastrazole/Arimidex, letrozole/Femara, and Aromasin) are first line for post-menopausal women.

    An earlier question asked about why chemo when nodes are negative. Chemo is used preventatively now, in cases where there is a chance something microscopic could have slipped through. MD's are using Oncotype to determine whose tumor is going to respond to chemo (some women were getting chemo but not benefiting) and those with high estrogen positivity can benefit even more from hormonal meds- tamoxifen for you apparently.

    The Mayo Clinic has a really good, manageable, clear book about breast cancer. Susan Love and John Link (both MD's) also have good books out. It helped me a lot to get a book!


  • YoungTurkNYC
    YoungTurkNYC Member Posts: 334
    edited April 2015

    Shanann,

    I wanted to let you know that the Oncotype Dx recurrence score is only relevant to whether or not CHEMO is beneficial to you.  In the Oncotype DX trial all women took tamoxifen for 5 years, so the Oncotype DX score assumes that you will take 5 years of tamoxifen.  Therefore, it has no relevance on your decision of whether or not you should be taking hormonal treatment.  For women with very low Oncotype scores, they may be extremely responsive to hormonal treatment (and hence low Oncotype scores and NO CHEMO), but if they had not taken the hormonal treatment, their recurrence rates would be much higher. 

    I keep writing on various threads about this distinction, because it seems to me that many women are putting too much stock into this ONE number in their treatment decisions, and especially when they are deciding to forego hormonal treatment - as stated above, the Oncotype DX score has NO relevance as to whether or not a patient should have hormonal treatment - it is only relevant as to the decision with respect to chemotherapy.

    Also, as you know tumors are made up of cells, and one or more cells break off the tumor and go into the bloodstream, when the cancer is invasive.  Many of these cells do not survive their travel in the bloodstream, but some do.  The only method that a cancer cell could go and metastasize in some other part of your body is NOT through the lymph nodes.  These cells also enter and travel directly through the bloodstream.  A single cell that survives may cause a future metastasis. All systemic therapies target these cells that have escaped the tumor - anti-hormonals, chemo etc.  If you have a lumpectomy, the radiation is necessary. If you have a mastectomy, radiation may or may not be necessary depending on your margins and whether or not you have lymph node involvement.

    I am so sorry you have found yourself in a place where you have to make all these decisions.  I hope your treatment goes very well.  Chemo is not as scary or bad as one imagines.  After my first infusion of AC, I went out to dinner with friends.  The modern anti-nausea medicines are extremely strong and work very very well, as well as all other "support" medicines given during the chemo.  I personally hate nausea, and was very happy that the medicines worked so well.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2015

    shanann - I am curious where the ovarian cancer side effect information came from.  I had not heard that previously, although I have read info about ovarian cysts occurring.  Uterine thickening is a more documented side effect, and most docs monitor that closely for their patients on Tamoxifen.

  • Shanann
    Shanann Member Posts: 106
    edited April 2015

    https://www.breastcancercare.org.uk/breast-cancer-...

    It may cause ovarian cancer and/or polyps. I have read that it might also cause Uterine cancer. Both my mother, and her sister had uterine cancer, and my aunt died from the disease (she refused to be treated until it was too late). Since it runs in my family I am greatly concerned.

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