First followup mammo and dreaded callback

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brigid_TO
brigid_TO Member Posts: 75
edited July 2017 in DCIS (Ductal Carcinoma In Situ)

I went in for my first mammo since finishing radiation 6 mo ago yesterday. It went pretty well, no pain at all. My appt sheet showed mammogram and ultrasound but they only did a screening mammogram, 2 pictures each breast. I questioned that and the woman checked at the desk and said the appt sheet was filled out correctly. So off I went happy to be done. Dreaded "unknown number" call first thing this morning wanting to schedule additional mammogram pictures. I am scheduled for next wed morning. They had no details to offer and said if I had any questions to call my Dr. I am followed by my BS who did not return my calls today.

ugh yikes and all of that-not what I was expecting both in needing to return and in my reaction. I had that terrible sinking panic feeling and racing thoughts trying to calculate all the possibilities. It has been a crappy day. There are a range of possibilities tipping more to the likelihood (I think , I hope) that they were originally supposed to do a diagnostic mammogram and ultrasound and now need to complete that to the possibility they have seen some new and terrible thing that will require new rounds of awfulness.

I called the mammogram place to get a copy of the radiologist's report but I waited too late in the day and will need to pick it up tomorrow. I left 3 messages with my BS so hopefully will hear back from him. No way am I waiting until Wed or later to learn more. Hard to believe what a gut punch this is- I realize now I am walking around with this low level dread that doesn't take a lot of fuel to flare up.

That's all -I'll post back when I have more to tell.

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  • CAMommy
    CAMommy Member Posts: 437
    edited July 2017

    I am too surprised they didn't do more images or the magnified ones. They did those for me the first year. The radiologist also read my images before I left so if he needed more I was right there and also was able to give me the all clear before I left too.

    I would suspect it is because they needed more images. There is a lot of scar tissue in the breast after the surgery.



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  • candles1
    candles1 Member Posts: 77
    edited July 2017

    Hopefully they just screwed up and just didn't do everything they were supposed to do. But how annoying that they can't communicate that to you immediately (if that's the case). Certainly they know how inflammatory these callbacks are to us.
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  • brigid_TO
    brigid_TO Member Posts: 75
    edited July 2017

    After a runaround today I got a copy of the the radiologists report. Lucky I am close by and can go in person to ask for these things. They saw microcalcifications next to the surgical site and requested magnified views. Bi-Rads 0. Well ok at least I know something now. Trying not to run too far ahead of myself with my imaginings. I spoke to the BS secretary who will provide the result to me hopefully that same day. Let's hope for a Bi-Rads 2 but I will deal with whatever comes.

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  • Annette47
    Annette47 Member Posts: 957
    edited July 2017

    The first 3 years after my surgery/rads they automatically did a diagnostic mammo, which involved plenty of extra views etc. I’m guessing they do that because otherwise most people who are post-surgical would be called back for more views. The radiologist told me that after surgery/rads it “looks like a train wreck in there”, so not to be too worried.

    I believe after my first one, I got a letter saying there were some changes and to come back in 6 months, but nothing came of it and I’m now back on yearly ones (will be 5 years since diagnosis in Nov).

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  • brigid_TO
    brigid_TO Member Posts: 75
    edited July 2017

    I had my magnified views done today. Although I still don't have the details they now have scheduled me for a biopsy next week. Either ultrasound core if they can see what they want to sample that way or a stereotactic core if necessary. Again I am trying to get a copy of the report. The BS secretary said she would phone once the report arrived but I didn't hear from her. This is really annoying right now. They are just starting patient online record access and it can't come soon enough.

    I know this doesn't necessarily mean a recurrence but I am not liking my odds as much. And, god forbid, there is a recurrence then I wonder "how the hell did that happen?! and did someone not do what they were supposed to last November? I had lots of imaging back then, mammograms, ultrasounds, two MRI's and two core biopsies. I never had a diagnosis before surgery-just one benign biopsy, one sortof benign biopsy and a radiologist that was concerned about discordant results. I agreed to a wide excisional biopsy and voila - DCIS - and a name change to lumpectomy.

    If anyone has feedback on how healing from core biopsies is for those with a radiated breast I would be interested to know your experience. And if there is a recurrence what are my options really? I guess I am looking at a mastectomy-or can they do another lumpectomy and leave it at that? Yikes-my spirits are ok but I hate having fallen into the river of treatment again.

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  • brigid_TO
    brigid_TO Member Posts: 75
    edited July 2017

    Writing to finish this chapter- I always dislike reading threads that drop off to nowhere. I had my stereotactic biopsy this week, not painful just a bit of pretzel twisting and what seemed like a cast of thousands. Thankfully a quick turnaround on the pathology report saying that all findings were benign. Yeah! I also saw my BS who ordered a mammo/revisit in 6 months. We now have a good post treatment baseline to measure future mammos against. Biopsy site seems to be healing pretty well. Much less swelling and bruising than my pre diagnosis biopsies. I suspect it is from the radiation damage though. My poor boob...

    So there you have it- a reprieve. I have spent the past two weeks preparing for a different finding. I am relieved but also realize that this is likely not the only callback or biopsy that I will face over time but I can relax for a while.

    Breast cancer is not for the faint of heart.

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  • AmusingSoprano
    AmusingSoprano Member Posts: 114
    edited July 2017

    Yay for the benign findings! I'm glad that you updated, as I too dislike it when people don't update. I always hope it means that things turned out well but you never know.

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  • LAstar
    LAstar Member Posts: 1,574
    edited July 2017

    Great news! Go enjoy summer!!!

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