New Diagnosis, trying to understand

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Daniami30
Daniami30 Member Posts: 2

Hi everyone, I'm newly diagnosed... It has been a whirlwind from finding a lump a little over 3 weeks ago, then a Mammogram, Ultrasound & Biopsy last Wed, to finding out it was Malignant Thurs. I had a surgical consultation yesterday and found out most of the Pathology report.

Infiltrating Ductal

Tumor - 2cm

Grade - 3

Estrogen/Progesterone - 2-3%

KI-67 - 80

The HER2/NEU result hasn't come back yet, which I thought was strange. The doc is sending me to an Oncologist on Friday, because he wants a 2nd opinion on whether or not my Estrogen/Progesterone should be a + or a - because of the low number. I'm also having an MRI on Friday as well.

I'm really anxious to have answers and figure all of this out.. Did anyone else have the low numbers? Anything else I need to find out form the doctor?

Thank you in advance for all advice and opinions!

-Scared

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Hi Daniami30-

    We want to welcome you to our community here at BCO, although we're sorry for the circumstances that have brought you here. We know the first days and weeks can be confusing and overwhelming; there's so much information coming your way, and it's a lot to process. We have a forum for our members with IDC, where you might find some more information, and be able to connect with members who have a similar diagnosis: https://community.breastcancer.org/forum/96.

    We hope this is helpful, and good luck with the oncologist on Friday. Please let us know how it goes!

    The Mods

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    BUMP -- can anyone else weigh in?

    Thanks!

  • windingshores
    windingshores Member Posts: 704
    edited October 2016

    Hello, Daniami,

    Do you have your HER2 results yet? They seem to take a couple of weeks, longer than some other tests. I accessed some of my tests online on a patient portal, and also at medical records, but your doctor should be able to give the results to you. If your HER2 is negative, you are "triple negative" and there is a forum for that here.

    Ki67 is considered unreliable by some docs and so some people never get one. I was told, or read (I forget) that it can be thrown off if a tumor is heterogeneous and one part is more proliferative than another. The surgery pathology will clarify.

    You may be offered neo-adjuvant chemo ( before surgery),  and if HER 2 is positive you will do chemo plus a drug like Herceptin. I am not sure when they do chemo before surgery versus after, but others can chime in.

    Since your ER/PR are relatively low, it seems that the docs may not order an Oncotype test for you, which is used to decide on chemo or not for hormone-positive cancers.

    I just wanted to say hi and sorry you are on this forum, but then again, it really is helpful and supportive. Keep us posted!



  • Daniami30
    Daniami30 Member Posts: 2
    edited October 2016

    Windingshores,

    I actually checked the patient portal today and looks like the HER2 is negative. I go to Oncology tomorrow (my Friday apt got moved). Hopefully, I will leave there with a better idea of what is going to happen treatment wise. Thank you so much for some explanations on my stuff, I really appreciate it!

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited October 2016

    Take someone with you to write down what the dr tells you. You're going to be getting a lot of information and it's going to be overwhelming. If you have to go by yourself, be sure to write down your questions beforehand and then write down the answers and all the other info. Ask a million questions. If there's something you don't understand then ask for a better explanation.

    Please come back and share with us and we'll try to help you make sense of this new bumpy road you find yourself on. We can't do much to even out the bumps but we're here to give you all the support you need.

    Best wishes for your appointment

  • sensitivehrt
    sensitivehrt Member Posts: 359
    edited October 2016

    Hi there,

    I had a BMX in May. The original pathology said I was ER + 8% and PR -, Hers- as well. My breast surgeon had said they might consider that a negative. When I went to oncology I was told nowadays a + is+ no matter what %. My tumor qualified for Oncotype score. When that came back my ER changed to ER- and PR+ by very small %. I opted for chemo as I was at the high intermediate range of scores. Just finished chemo and will be starting tamoxifen in December

    So sorry that you've had to join our group. But there's wonderful people on these forum for you

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2016

    Write down all the qudstions yoi come up with, make a seco d copy to hand to the Dr. If you don't understand his/her answers, keep asking until he/she puts it in words you can understand. Use your smart phone to record the appt - then if you have questions in the future you can review the exact words spoken. Not just what you (or a friend) might have written down which might not be exactly what the Dr said.

    What other tests are being run? What is your family history? Is neoadjuvan . Help being recommended? So many questions. It is good that you will be seeing a Chemo Dr before being rushed into surgery. If you are at a Can er Family, your info should be presented to the Cancer Board for recommendations.

  • juneping
    juneping Member Posts: 1,594
    edited October 2016

    i am sorry to meet you here....but even though you have all the result in front of you but the fact that it's not the final result until you have the surgery. that's the real cancer that you'll face and your team will tailor a plan for you.

    so, pls don't stress yourself out at the moment. just take a day at a time and don't worry about it. because it'll only make you feel worse. you already got through the worst...so take a deep breath and gather all the info and go through the surgery then make your decision.

    i wish you the best.

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