Mamm 4 months after, birads 3, what?!

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runor
runor Member Posts: 1,798

I just had a mammogram and ultrasound 4 months after end of radiation. The results say ' area of architectural distortion persists.' It goes on to say that it might be surgical scarring, or it might be cancer, not sure, hard to tell, hmmm, we'll wait and see.

As for getting on with my life, this is NOT helping! I feel uncertain every day and this has just shoved me further out onto thin ice!

If the whole point of radiation after lumpectomy is to nuke any 'stray' cancer cells, then it obviously didn't achieve that goal ! The 'architectural distortion' that was on my 2016 mammogram, that hurled me off this cliff, is still there!!!

I have an Oncotype 11, but I suppose any faint hope that provides goes out the window if there's a pile of leftover cancer percolating away in my boob. I assume Oncotypes are given on the understanding that cancer is removed and not left behind.

I do not blame the surgeon. I had a very weird radial scar that presented no palpable mass. The pathology report showed clear margins. Before the lumpectomy that radiologist fellow harpooned me with a tiny spear right into the middle of the mess to guide the surgeon there. I feel that everything was done as well as it could be. But I have no 'team'. I have seen 4 doctors over the course of treatment and not only are they not in the same hospital, they're not even in the same town! Team schmeem. I feel like I've been thrown out of the bus to deal with this on my own.

I have called the rad onc and hope she can tell me what a breast, 4 months after radiation, should look like. Should it be OBVIOUS that the cancer is gone? Should it be OBVIOUS what is scarring and what is more cancer? Because, according to the mamm and ultrasound, nothing is obvious at all and cancer cannot be ruled out. They want another look in 6 months - or I could have an MRI. Here, waiting for an MRI takes 10 - 14 months. Although I could have one at a private clinic if I'm willing to pay for it, which I am.

If anyone has any light to shed on this situation, please do. I was so hoping to hear, yup, looks good. That is NOT what I heard. The black cloud is descending.

Comments

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    agree with above post. Send a note to DJMammo, include the exact wording from your report. He would give you the best educated advice.

  • runor
    runor Member Posts: 1,798
    edited December 2017

    I did contact him and he was helpful. I appreciate his opinion.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    So glad. Yay for DJMammo!

  • MamaFelice
    MamaFelice Member Posts: 216
    edited December 2017

    Can you all please share more about this "DJMammo"?? Are there any others that can help with discerning different situations? Thank you

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    MamaFelice, DJMammo is a frequent poster on these boards. He is also a retired Radiologist, so has the experience to read posted excerpts of reports and advise about how to best interpret them and good follow up questions to ask. There are many others who can help with various situations, depending on what the situation is. We have lots of well informed members, many of whom are experts is specific things (like LE or Recon, research etc). Is there a situation you'd like help with?

  • runor
    runor Member Posts: 1,798
    edited December 2017

    I should post an update, in case anyone is wondering.

    My doctor's review of the mamm and ultrasound left me feeling unhappy. Go away and wait 6 months ... uh, no.

    I did call my radiation oncologist and bless her heart, she called me back and when I was done talking to her I felt at least that I understood the situation more clearly. She put everything in some sort of context, painted a BIG picture and helped me get perspective. Which is what I needed.

    I asked, didn't a month of radiation kill all the cancer? If I walked in with cancer, did I walk out with that same cancer? She said yes, if you walked in with a breast full of cancer you left radiation with that same breast full of cancer. The radiation I was given was designed to mop up a few, stray cells that might have been left behind after surgery. It was NOT designed to kill the amount of cancer cells in a tumour. So if I arrived with a mass of cancer, it was still there when I finished radiation.

    She said she had reviewed my pathology reports and the margins were good. She felt confident that the surgeon had gotten the mass, as targeted with a wire guide.

    She said the suggestion of an MRI might result in misleading conclusions since a contrast dye is watched for how smoothly it flows in and out of an area. If it flows with difficulty and constriction, that can lead to suspicion of cancer. But in my case, this breast had a surgical biopsy, was cut again a month later in a lumpectomy, then I had a post op bleed, all the internal stitching tore out and the surgeon opened me up again that same day, re-cauterized everything and put back together all the torn apart internal stitches. In other words I have a very LARGE amount of scarring. This boob has had a scalpel in it 3 times (armpit one time). So, in my particular case, an MRI might make things look even worse - save that until all other avenues of investigation have been used, said the radiation oncologist.

    She said the wording of the report sounds dire, it is cautious, but we have to also see what is NOT there. No one suggested a biopsy. She said if the radiologist felt there was much chance at all that the remaining architectural distortion was still active cancer, I would not have left the hospital that day without someone doing a biopsy right then and there. But no one showed up to poke my boob - so, reading between the lines, this is a good sign even though the language is worrying.

    She said she sees I requested a 2nd opinion on my original pathology report so she was requesting a 2nd opinion on the mammogram and ultrasound. Someone at the cancer clinic there would have a look. She will get back to me with the results some time this week.

    She also said if waiting 6 months for another mammogram makes me uncomfortable, go in again in 3 months or 4. Up to me. I do not have to wait 6 months.

    So the original bad news architectural distortion that showed up Dec 2016 is still there Dec 2017. Is it a scar? Is it cancer? I feel less freaked out than I did. Waiting to hear now what a second set of eyes thinks the situation is. Thank you all for listening.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    runor, your RO sounds like a keeper! That explanation, put in context, sounds different; some understandable. I am sorry that you are still going through this worry, but am glad that you weren't dismissed, and that the discussion with her left you feeling (a bit) better. I am also glad you're going to get another set of eyes on it. Thanks for the update!

  • Rn55
    Rn55 Member Posts: 2
    edited January 2018

    hi I am curious about diarrhea after right breast radiation. it happens every time after I eat my RO poo pooed and said I have never heard of that before. which is his answer to most of my concerns.very frustrating. I just want to know maybe how long this typically lasts. also the fatigue I feel is not getting much better. He also states it is probably related to something else (work). becouse it is uncommon for fatigue with breast radiation.

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