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Hi, new and just diagnosed with TN

DebbyBC Member Posts: 1

I’m in shock mainly because I’m 56 and have been on estrogen and progesterone since 2016 so when they first saw something I was sure it was the hormones!

It seems to strike the younger more often. Anyone else this age when diagnosed? We are still waiting for the PDL-1 results. Mt KI-67 is 54% and my mass is 2.4 cm and Grade 3. I have another “area” that is Grade 2. My axillary node was negative!!

I go to the surgeon on Wed (although now that typing is back I may see if we can get in Tuesday even). Based on what I’ve read I think it’ll be chemo first (esp since 2 areas both in left breast).

Since my node was clear will there be a lot of other testing? I’ve had mammo, US, MRI and biopsy. I didn’t know if there would be a PET scan or another else since it doesn’t seem to be In the nodes.

Obviously I’ll know more Wed but thought I’d ask here what your early testing included. Thanks


  • moderators
    moderators Posts: 8,085
    edited February 2022

    Hi DebbyBC,

    We're so very sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our Community an amazing source of advice, information, encouragement, and support -- we're all here for you!

    While you wait for the ever-helpful responses from our awesome members, we'd suggest you take a look at the following links to gain some more insight about what you're dealing with:

    We hope this helps! Please keep us posted here on how your appointment with the surgeon goes.

    --The Mods

  • norcals
    norcals Member Posts: 206
    edited February 2022


    It is a shock when you get “the call” from your doctor. I was stunned as well and in a fog for several days. It’s good that you received details of the BC before your first meeting with the doctor so that you can prepare. I did not know I was TN until the day of my appointment with the doctor. This website has a lot of information on TNBC that will be helpful.

    I had a battery of tests (breast and brain MRI, bone scan, whole body CT scan, heart ECG; no PET scan due to timing), before I started neoadjuvant chemo. I was node positive and the tumor size was very large (5+ cm), so they may have a different protocol if you are node negative. I was under 50 y/o when I was diagnosed, so they performed genetic testing as well. (I was told that my insurance would not pay for the genetic testing if I was 50+). Also, after my first appointment with my breast surgeon, my case was presented to a tumor board and a choice of treatment plans was presented to me.

    Hopefully, your first appointment with your doctor helps ease some of the anxiety that comes with a BC diagnosis

  • wecomu
    wecomu Member Posts: 1
    edited April 2022

    Added by Mods: This is an opinion of the poster. [Talk to your doctor before making any treatment choices.]

    Try to do surgery first, then take chemotherapy. according to your doctor advice. I wish your chemotherapy work (no recurrence, no cancer spreading, no metastasis), If the chemotherapy does not work well, there is cancer recurrence and spreading, there is another option. Try to use gene product PTPN12, a tyrosine protein phosphotase, which has been show effective in several clinical trials specifically in inhibiting triple negative breast cancer.

  • moth
    moth Member Posts: 3,293
    edited April 2022

    I'm going to disagree with wecomu as the current general approach in tnbc is chemo & immunotherapy first, surgery, assesesment of response & then decisions for either additional oral chemo or immunotherapy.

    Debby, TNBC has had huge changes in treatment protocols just since summer of 2021 so it's important that your oncologist is aware of the latest guidelines.