Diagnosed with Invasive Ductal No cancer Found after Mastectomy!

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CherylFl
CherylFl Member Posts: 11

I had ultrasound guided biopsy on 1/10/19 Results were Invasive Ductal(IDC) ER/PR Positive HER-NEG.I was not candidate for Lumpectomy so had Bilateral Mastectomy on 2/8/19.Post mastectomy the surgeon and pathology found no evidence of IDC in any of the tissue!

As a blood vessel was in the 1.1cm biopsy site a small gauge spring loaded gun was used for biopsy a 7mm piece of tissue removed for path. When I asked surgeon why no IDC found after masectomy he said "would you have rather have had cancer" this after just removing 2 breast!

Oncologist sent off the Biopsy tissue to ONCO TEST as the mastectomy tissue at that site which was marked with a clip showed no cancer.

ONCO test came back as a 28 which of course chemo should be considered!!!.

I don't know how the IDC was not anywhere in any mastectomy slides & if the score from ONCO test can be trusted? I would have thought there would have been residual IDC around the 7mm that was removed.

Wondering if others have had this experience.

I got 2nd opinions on surgery/plastic surgery but did not question pathology nor did any Dr suggest getting 2nd opinion. So many decisions being made in short time.

I have been told the ONCO test would have confirmed the 1st Pathology DX of Invasive Ductal and

the Post Mastectomy must have missed it.



Comments

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited March 2019

    It seems like either the two biopsies essentially REMOVED the cancer, or a mistake of some kind was made.

    Why were you not a candidate for lumpectomy? What sort of imaging did you have prior to surgery (MRI?). Something seems pretty fishy about this!!

    I am sorry for you experiencing such a weird sequence of events and maybe having a MX you did not need. It must feel very upsetting. I hope you get some better answers soon and I send you a big but gentle hug.

  • CherylFl
    CherylFl Member Posts: 11
    edited March 2019

    I had one small gauge needle biopsy of the suspicious site found by mammogram, confirmed then removed with ultrasound guidance. After that came back as Invasive Ductal, Bilateral MRI with 3 additional highly suspicious spots.

    And per MRI report residual neoplasma around the biopsy site visable that day. So that residual neoplasma was

    not seen after mastectomy.

    Attempt 2 weeks later to biopsy all 3  to consider lumpectomy but to much inflammation the clip from biopsy not even visible. It was there and examined after mastectomy.

    The spots were spread all around left 1/2 breast  & under nipple so  lumpectomy or breast conservation after consults with 2 plastic surgeons not really a good option.  I also had skin, cardiac and immune issues that radiation after a lumpectomy would have been a problem.

    I have seen where people are DX with In situ and it turns to invasive but I wondered if people DX with Invasive but its not there after Lumpectomies or Mastectomies??

    Maybe I could put that in a topic.

    It seems unusual to me but I am not a pathologist maybe the biopsy site tissue was damaged during removal & cant be "read" because I really don't think a small gauge needle could have removed it all if it was invasive.


  • wallan
    wallan Member Posts: 1,275
    edited March 2019

    I am so sorry you had to go thru a bilateral mastectomy.

    This is a sad story and if it were me, heads would roll. I would get a lawyer if it were me.

    So do you have cancer then? I doubt it. Which is good news in a bittersweet way.

    But still.... I would be so upset...

    Hugs to you...

    wallan

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2019

    So that all the responses are in one place, I will copy and paste here the answer I provided to Cheryl yesteray when she posted the same information and questions in a different thread:

    ******

    Cheryl, the final diagnosis is based on the combined findings of both the biopsy pathology and the surgery pathology. While it's not all that common, it certainly can happen that all the cancer was removed in the biopsy. And if invasive cancer was found in the biopsy, then unfortunately yes, you do have a diagnosis of invasive cancer, even if no invasive cancer was found in the surgical pathology.

    Given the different findings between the biopsy and the surgery, a logical next step would be to have the biopsy sample reassessed, to ensure that the finding of invasive cancer was correct. Since your biopsy sample was submitted for the Oncotype analysis, and since the Oncotype analysis would have noted if no invasive cancer was found, this second step has in effect been done. The Oncotype score is the confirmation of the invasive cancer diagnosis.

    As for the need for chemo, the question to ask is how much risk reduction benefit you will get from chemo. The TAILORx study that was released last year showed no benefit to chemo for anyone with an Oncotype score up to 25. With a score of 28, this means that there will be some benefit from chemo, but your Oncologist should be able to tell you how much benefit is estimated. In other words, what is your recurrence risk with hormone therapy alone, and how much lower is your recurrence risk if you have chemo and then take hormone therapy? That information can help you decide if chemo is worthwhile for you.

    *****

    Perhaps a reassessment of the biopsy sample would be advised, although if the tissue was sent for Oncotype testing, nothing more may be available. Instead, a detailed review of the Oncotype results should confirm whether or not invasive cancer was found in the biopsy sample, which would mean a diagnosis of IDC


  • wallan
    wallan Member Posts: 1,275
    edited March 2019

    Hi Bessie:

    Nice to see you on the boards again!

    You helped me so much when I was dx'd second time.

    This is a very informative response and good to know.

    wallan

  • DATNY
    DATNY Member Posts: 358
    edited March 2019

    Something in your write up caught my attention " but to much inflammation the clip from biopsy not even visible.". Perhaps the biopsy triggered your immune system to respond and that cleaned up the remaining cancer. Spontaneous remission does exist and infection or trauma could trigger it. The high level of inflammation could have been due to this. In any case I would request preparation of a new set of slides from the extracted tissue and send them to an independent pathologist to confirm the original diagnosis. People do make mistakes. 

  • CherylFl
    CherylFl Member Posts: 11
    edited March 2019

    Thank all of you... I received a message from a moderator to post this post as a new topic, just learning how to navigate the site so that is why its in 2 places. Apologize if that caused a problem.

    I have a appointment with a  Moffitt oncological surgeon in Florida this coming Wed so I hope to know more before starting the chemo. They have requested all my slides & records from providers although ONCO still has one slide .

    I am being told as its been over 4 weeks since surgery I should start chemo by the 6th week.


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