How could they missed it?

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BostonLex
BostonLex Member Posts: 28
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I thought I have DCIS, but today they told me that they found invasive cancer that 's 4mm in size in my pathology slides.

I had my re-excision done in Beth Iseal Deconess Medical Center (BIDMC) in May. The pathology confirmed my diagonosis of DCIS. I went for a consultation with a DCIS expert in SF and he didn't see any invasive cancer either. 

Because I need further surgery to remove remianing DCIS and I wanted to find a better doctor, I went to B&W for another consultation. The B&W requested my pathology slides from BIDMC and they found the 4mm invasive cancer. I was very shocked and couldn't believe the new finding. How could they miss it? BIDMC has the best pathologists in the world. How could both of BIDMC and the DCIS expert missed it? They told me today that the BIDMC has amended their report last Friday, but no one in BIDMC bothered to tell me?. I'll call tomorrow to get the amended pathology report. 

Is there anyone here share similar experiences? My new doctor told me that they changed my diagonosis, but that hasn't changed the outcome. Is the treatment the same for DCIS and grade 1 invasive breast cancer. I'm very dosappointed today. After all four months of dealing with DCIS, now it's invasive...

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited July 2010

    lex

    I am sorry this happened to you--- I would strongly recommend yet another opinion.  I had my surgery at the Mass General- then treatment at the Farber- and I asked the Farber to do their own pathology so that I could be sure that we were all on the same page. My onc told me it was standard for them to re-do the pathology from other places.....

    Human error, negligence, hard to know.... but I think it is more troubling that no one called to tell you.  

    I would vote for a another opinion--- just to be absolutely certain.  I would also suggest getting the oncotype test done.... this is really helpful in the decision making on invasive cancers......

    good luck

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited July 2010

    lex

    I am sorry this happened to you--- I would strongly recommend yet another opinion.  I had my surgery at the Mass General- then treatment at the Farber- and I asked the Farber to do their own pathology so that I could be sure that we were all on the same page. My onc told me it was standard for them to re-do the pathology from other places.....

    Human error, negligence, hard to know.... but I think it is more troubling that no one called to tell you.  

    I would vote for a another opinion--- just to be absolutely certain.  I would also suggest getting the oncotype test done.... this is really helpful in the decision making on invasive cancers......the treatment may or may not be the same--and the node status would be good to know... keep us posted.  

    good luck

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited July 2010

    lex 

    sorry for the duplicates--but one thing--since there is some invasive stuff there, that is what they treat--- and remember, invasive does NOT mean it has invaded, just means that it could---- did you have a sentinel node biopsy??

    Please insist on the oncotype test--don't let anyone tell you that because of the low grade you won't need chemo (I hope that you don't, but get the test done so you know for sure).  I think you have good reason to want double triple information now.....

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited July 2010

    That is quite concerning. I have no idea except I think those micro invasions are hard to find. The good news is ( as if there is any when it comes to BC), it was apparently so small it took three people to find it. This probably means your treatment will remain the same. I am sorry this happened but thankful it did too so you know you exact diagnosis. I sent my final mastectomy pathology for a second opinion to MD Anderson. I am now wondering if I should have sent it for a third. Who knows.. I would however just like the poster said before me go ahead and get yet another opionion to back this one up.

    Blessings and hugs

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  • Roadrunner
    Roadrunner Member Posts: 35
    edited July 2010

    BostonLex, I had a similar experience. I was told by the major Boston hospital where I had my biopsy done (not Beth Israel) that I had a small invasive tumor. I went to BWH-DFCI for treatment, and the pathologist there said I also an an area of DCIS. They explained that the pathologist at Dana Farber does only breast pathology, and that was not the case in the hospital where I had the original interpretation done. For me it meant a mastectomy instead of a lumpectomy. Then l had a high Oncotype score so I had chemo. It was nearly three years ago and I'm fully recovered.  Also I changed surgeons within the BWH system and it went very smoothly. Send me a private message if you would like to know more about that.

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  • BostonLex
    BostonLex Member Posts: 28
    edited August 2010

    Hi Everyone, Thank you all for sharing your experiences and insights. I wanted to give you an update. I have spent past month redoing my research and learning about IDC and interviewing doctors on my options. Personally, I have doubts on the accuracy of current Breast Cancer diagnosis in our time and I don't think I want another surprise. I have made my decision to have an unilateral MX with immidiate recon. My surgery is scheduled on 15SEP. I'll keep you posted how my surgery goes.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited August 2010

    I'm sorry all this crap has happened and I wish you the best.  Good luck!

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited August 2010

    Likely won't change your course of treatment at all, except that you may have a sentinel node biopsy performed just to make sure.

    I had a lumpectomy for DCIS and 1.75 mm of IDC was surprisingly reported on final path. report (didn't show up in mammo or MRI). No chemo was prescribed and radiation treatment remained the same, but that was only after SNB results thankfully showed no nodal involvement.

    Updated: I just noticed that you have decided to have a mast. Good luck with the surgery.

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  • BostonLex
    BostonLex Member Posts: 28
    edited August 2010

    Thank you for sharing, CTMOM1234! Congratulations that your sentinel nodes are clean. I will need the sentinel node biopsy too. Did your doctor order Oncotype test? My BS will not order, I'll ask if the Med. Oncologist can order that.

    I was all for breast conservation procedure when I thought I had DCIS. I'm petite with small breasts. It'd be very difficult to achieve reasonable cosmetic results if I went for another partial mastectomy. I also don't want radiation, so an MX feels like a good decision for me. The 4 mm IDC too didn't show up in mammo and MRI, even didn't show up on the MRI guided biopsy and excisional biopsy, the finding of it was a total shock. Based on my mammo, ultrasound and MRI, neither my BS nor I thought I have DCIS and/or IDC, however, every step of this diagonosis journey, we were disappointed by an additional finding / diagonosis that was not expected. This leaves me wonder if I have any other DCIS or IDC somewhere else in my breast. I know the chance is small but there. The fear of missing diagonosis also lead me to decide an MX. I know there are pros and cons for every treatment option we make. That's why the treatment of Breast Cancer often leaves woman to make very personal decisions and women are much more intimately involved in their own treatments for Breast Cancer than any other diseases. That's why being diagnosed and going through treatment are such an emotional journey for all of us.

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