How often do they get staging RIGHT before surgery

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Anonymous
Anonymous Member Posts: 1,376
edited October 2018 in Just Diagnosed
How often do they get staging RIGHT before surgery
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  • PurpleCat
    PurpleCat Member Posts: 358
    edited October 2018

    I am waiting for the final report on my lumpectomy, which was biopsied at DCIS, stage 0. I am playing all kinds of mind games wondering if they might have gotten the staging wrong and it’s actually stage one or even worse. From the thread below, which is filling up with stories from people whose initial biopsies were wrong, I know it is a possibility, and it is freaking me out. So, I am hoping that everyone whose initial biopsy actually matched the final surgery report will post their story here! I don’t mean in any way to criticize the existing thread, because I certainly want to know that information myself I am just hoping that there will be a lot more incidences of getting it right than otherwise!

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2018

    My staging after imaging and biopsies was correct.

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  • Cat_Lady
    Cat_Lady Member Posts: 8
    edited October 2018

    I completely understand where you're coming from. I had the exact same fear but my staging was the same. The only thing that changed was the size of my tumor. It was bigger than they thought but not by much. Staging before surgery isn't 100% certain because it's just a clinical diagnosis. Once the results come back from the surgery you will get your official pathology report. The odds of your staging being different is very slim but still possible. The doctors are pretty good at knowing what to look for prior to surgery.

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  • PurpleCat
    PurpleCat Member Posts: 358
    edited October 2018

    ksusan, I absolutely love your "Mutant Uprising" signature!

    Thanks, CatLady! I guess everyone worries about this at this point in the process. Maybe it's because by now we're accustomed to so much bad news. Something was wrong on your mammogram; you need a follow-up. The follow-up looked funky; you need a biopsy. The biopsy showed cancer. And now we wait for this final news while recovering from surgery, feeling vulnerable and sore and messed up from anesthesia and pain meds. It's not so easy to think positive.

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2018

    Thanks!

    The uncertainty at the diagnostic/surgical/testing stages can be terrible.

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  • Cat_Lady
    Cat_Lady Member Posts: 8
    edited October 2018

    PurpleCat,

    Most definitely! I think the worrying comes with the diagnosis. Even after having my surgery and starting the stages of treatment my worries are still the same. I have headaches so I worry about brain cancer, got an MRI came back normal. I have leg pain so I worry about blood clots, got a ultrasound came back normal. I'm sure the doctors that handle our cases see it all the time. I don't think that fear will ever go away. Just have to face it. I haven't done that yet lol

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  • MBPooch
    MBPooch Member Posts: 229
    edited October 2018

    My diagnosis and staging was correct after surgery.

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  • JoE777
    JoE777 Member Posts: 628
    edited October 2018

    The diagnosis of cancer at the biopsy is the biggy. Staging comes after surgery ,testing and path reports. You CAN'T know for certainthe extent of the disease until that's done. Don't wear yourself out with worrying about the wrong thing.

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited October 2018
    PurpleCat, if I remember correctly, the chances of being upstaged at any particular point are about 15-20%. I was on the wrong side of the stats and ADH after a core biopsy, was DCIS after excisional biopsy (lumpectomy) and IDC after mastectomy. I should have been buying lottery tickets.
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  • PurpleCat
    PurpleCat Member Posts: 358
    edited October 2018

    How ironic, or maybe I'm clairvoyant: mine got upstaged too. I'm now considered invasive, although staging hasn't been determined because they didn't get a lymph node because they don't bother with lymph nodes when it's DCIS. THey said this happens in about 10-15% of DCIS surgeries.

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  • Pi-Xi
    Pi-Xi Member Posts: 348
    edited October 2018

    PurpleCat, I'm so sorry to hear that they found invasive cancer. I am "unstaged" and chose to stay that way as I had mastectomy and there was no guarantee that even with skin and nipple sparing that the sentinel nodes could be found afterward. It was my choice not to have the SNB during the surgery. At the time, with DCIS, I was more afraid of lymphedema than cancer. Most of the time I'm fine with that decision!

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