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Newly diagnosed with TNBC: PET scan????

bmr Member Posts: 2

Hello everyone,

I am new here and completely devastated. Just got diagnosed with TNBC (HER2 is indeterminate at 2+ and sent for FISH).y MO appointment is on Wednesday, followed by a SO appointment.

Stats so far: tumor is 2.8 cm, one biopsies LN in the axilla is negative. They are scheduling a breast MRI.

My question is the following…. Does everyone get a full body PET prior to initiating chemo? Do they automatically do that to rule out distant mets, or do they just go by breast MRI and start the chemo?

I know it’s silly, but I don’t want the PET. I like to be in denial, lol. If metastatic, I might just give up


  • mountainmia
    mountainmia Member Posts: 857

    No, it's not typical to look for distant mets prior to beginning treatment, unless there are symptoms to indicate it. Note, some cancer clinics might do that, as a matter of course. If a PET is recommended, ask why. Even if they recommend at PET, you have the option of turning it down.

    Don't give up yet, even if there's mets! New treatments come online all the time. People are living longer and better. Yes, there can be a time to decide you're done, but please not before you've even started the process.

    All the best. Let us know how you're doing.

  • elainetherese
    elainetherese Member Posts: 1,625

    I did get a PET scan after being diagnosed with triple positive IDC in 2014. I got a PET scan because my tumor was big (5 cm+) and an MRI + ultrasound showed one node was compromised. However, PET scans are notorious for producing false positives, which can just cause more worry and more scans. I had something on my left femoral neck (hip) light up on three PET scans, which led to further scans (CT + MRI of hip) which showed nothing. Ugh. I think your MRI is enough scanning unless there's anything else suspicious.

  • cookie54
    cookie54 Member Posts: 617

    Hey bmr sorry about your diagnosis. I agree with the others as far as PET goes. For me when I was first diagnosed I did not have a PET either. When my cancer metastasized to my axillary lymph node I then had my first PET.

    Try to remaIn optimistic and take things one step at a time. I know this is all scary but you will get through. There have been many advances that I have experienced since I was first diagnosed. So yes don't give up before you start! You will feel better once you get your plan. Sending positive vibes you way.

  • bmr
    bmr Member Posts: 2
    Thanks all for the responses. They did not order a PET but did a breast MRI. It showed that the tumor was a bit larger than measured by ultrasound: 3.5 cm (vs 2.8). It also showed 3 lymph nodes, one of which was already biopsied and was negative. There was some other weird stuff like non-mass enhancement, but my SO just kind of shrugged at that and said it’s neither here nor there as far as the treatment goes. They also saw a 1.3 cm mass in the other breast which they want to biopsy (ugh). I am opting for a double mastectomy so hopefully it’s a non-issue.
    I am all set to start Keynote 522 this Thursday
  • cookie54
    cookie54 Member Posts: 617

    Sorry to hear another biopsy is in your future ,just plain stinks! Positive vibes as you start your plan Thursday, best wishes.

  • hopefunlive
    hopefunlive Member Posts: 3
    edited March 2023

    My Dr. ordered a PET Scan and Insurance denied it. They approved a CT Scan instead. I also had an MRI. The results were similar to yours. My Drs. said no need for another biopsy since I was starting Chemo anyway.

  • moderators
    moderators Posts: 7,684
    edited March 2023

    positive vibes for all of you. And welcome to our community!

  • thisoldbathastnbc23
    thisoldbathastnbc23 Member Posts: 1
    edited March 2023

    Hi I'm also newly diagnosed (3-3-23) with TNBC of my left breast. I have had a CT and nuclear bone scan. My tumor is stage 1 by size, nodes appear to be clean but will know more when I have surgery. There were no Mets on my scans. My surgeon said she prefers CT image to PET because it's more dynamic and better to see differences in successive CT scans. Hope this helps.