so lost, need help with my new diagnosis

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  • tshire
    tshire Member Posts: 239
    edited August 2015

    Well, the first oncologist I talked to wants me to do chemo- 4 rounds of TC. Mostly because of my age, some because of my Ki67 being high for grade 1, and my 20 Oncotype. But she also wants to present my case to a tumor board, because I am so damn special and unusual. :/

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  • windingshores
    windingshores Member Posts: 704
    edited August 2015

    Have you had a second opinion?

    Your ki67 is highish: any chance it is from biopsy site healing? (Healing cells can throw off the ki67; healing resembles the fast division the ki67 is looking for. Then again, with positive ER and PR, it may be the ki67 that is pulling your Oncotype up). Many docs are disregarding the k167. I don't know how I feel about it! Very confusing. Do you have any lymphovascular invasion?

    The TailorX trial is coming out this year I think. Intermediate Oncotypes are hard for decisions on treatment. You are in a tough spot. I would get 2nd and even 3rd opinions until you feel really right about your treatment. Good luck!

    www.genomichealth.com/en-US/Publications/ClinicalTrials.aspx

    Information on the RxPONDER Trial, TAILORx, and Oncotype DX assay from Genomic Health.

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  • tshire
    tshire Member Posts: 239
    edited August 2015

    The Ki67 was from my biopsy sample. :/

    Nope, no LVI seen. No necrosis. Well differentiated tumor. <1 mitosis seen per 10 HPF, which I thought was good, but then she said most grade 1 tumors have NO mitosis seen. She said that combined with the Ki67 indicates proliferation, and that's what the Oncotype reflects.

    Yes, I'm going to another MO next week, plus I am going to MD Anderson in Houston as soon as they call me back with an appointment date. I'm interested in finding out what the tumor board says too.

    My surgeon also ordered the Mammaprint test.

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  • cajunqueen15
    cajunqueen15 Member Posts: 794
    edited August 2015

    Hi hon!

    I'm still in the beginning stages of all of this, but I wanted to send some love from someone also having been diagnosed in my 30's. Our priorities may be different since I have 3 children and we were already finished with having children. However, what I wanted to share was that I have a good friend who was diagnosed at 25 with Stage II IDC, ER+/PR+, HER2-. She had a lumpectomy, radiation, and chemo and then on to Tamoxifen. She was negative for all BRCA mutations as well and then had her eggs frozen prior to the chemo. I just wanted to throw that out there as a possibility for you when you are facing these tough decisions so young.

    Xo.

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  • tshire
    tshire Member Posts: 239
    edited August 2015

    Well, surgeon just called- Mammaprint came back high risk. 22% of distant recurrence with no therapy. Luminal B. I guess that clinches it.

    Damn.

    I'm having a hard time right now.

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  • 123JustMe
    123JustMe Member Posts: 385
    edited August 2015

    Tshire I am so sorry! Cancer sucks!!! But at least you have an answer and can throw everything at it and not have noregrets that you didn't do something. {{{Hugs}}}

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited August 2015

    Tshire, but it will be nice to have you here! I am amazed they told you luminal b. I think you will do fine

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited August 2015

    tshire, I wanted to pass and live out my days, but calmed down and decided to make a huge run at it with everything in the tool box. I did DD AC/T, then a mastectomy, and rads. Over one year later I am back to work, and no scans until after Labor Day. It does suck, but I never wanted to regret my choice just in case. I've done it all, and my only thing left is chemo again since I am triple negative.


    We are all lost at some point, but knowledge is power, and the choices are yours to make. Do it for you, and you will feel better that you had the option to make the choice and go at it. I went the fearless badass approach. So game on! We have your back. Cheryl

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2015

    YAY for fearless and bad-ass!!

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  • Sonja78
    Sonja78 Member Posts: 1
    edited August 2015



    Hi. I'm 37 and was literally just Diagnosed with IDC on Friday. I'm a mom of 4; 20,19,13, and 5 and a positive female influence to three more great teenagers. Since I discovered lump last month, life has been an absolute whirlwind. I am meeting the oncologist today, and the surgeon again tomorrow. I know nothing at this point other than it is IDC, and I need a mastectomy/lumpectomy and lymph node dissection to Stage the cancer. There isn't a treatment plan yet.
    Everything is moving so fast that I feel like life is moving at warp speed, and I can't make educated decisions because the pathology reports were not complete to even know what grade or ER/PR/HER2 it is. I think this info would help the Dr. Decide what surgery to do, right?
    Did your Dx go this fast? Did you feel like this? Who led your beginning process, your oncologist or your BS? I am so confused. Advice?


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  • loriekg
    loriekg Member Posts: 263
    edited August 2015

    Hi Sonja! You said the pathology reports were not complete…were they running more tests on the biopsy? Yes, you are correct, the pathology of the tumor will dictate your treatment plan. And yes…everything did move super fast for me too! I had my biopsy on a Monday, got the dx over the phone on Tuesday, met with BS on Wednesday. MRI the following Monday, and surgery for the sentinel node biopsy and port that Friday! I remember they were trying to schedule an appointment with the oncologist and saying she'd see me on her lunch break…I thought "OMG—how bad is this??!" To answer your question, who led the beginning process—I saw the BS first for the consult and she went over the pathology, and did tell me the order things would go in (chemo first since I was HER2+). I met with MO the following week and it was really just a reiteration of what I learned from BS, but in more detail and maybe I was able to understand and ask more questions since I had time to absorb things and do a little research. That is what I did each stage along the way…before chemo—I was reading reading reading about what to expect and how to make things easier. Then it was on to the next thing to research, MX or lumpectomy…reconstruction or not...etc. That is what made things easier for me. And when I say research and reading—I mean here, NOT Google in general! :) These boards were a life-saver for me those early days...and still are! What everyone says is absolutely true...this is the worst time, being unsure of your diagnosis. Everything will get sooo much better when your plan is in place!! --Lorie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2015

    Sonja, Welcome to BCO. I hope your appointments helped to clear up some questions for you. I'm so sorry for the reason you have to be here. You picked a great place for support. The beginning part is difficult for us all. Once you have a treatment plan in place, it should get a bit easier. Hang in there!! Sending gentle hugs to you!!

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