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LInda21's avatar
LInda21
Member
12 years ago

Missed Report

Hi, 

I found out on Thursday that one of my Histopathology reports from early December had been missed - as in not read and the contents not acted on.  But that is not the end of the story.  I also had a delay in my initial diagnosis.

The beginning of the story was last February 2013 where my breast lump was not biopsied, after mammogram and ultrasound, despite having dense breast tissue.  The result given was fibrocystic change.  Then late November I was finally biopsied and diagnosed with hi-grade Papilliary DCIS.  Had two surgeries in December.  Due to margins still not being clear next surgery was in February with mastectomy (bi-lateral as I elected for prophylactic) with TRAM reconstruction.  All up there was 110mm of tumor.

During this time I requested copies of the Histopathology reports as I wanted to know what I had.  Didn't receive the reports until after my mastectomy.  I had previously enquired several times what the PR/ER results were and told this hasn't been done.  Yet I noticed on the report that this test had been ordered and there was an issue with the Sentinel Lymph results which relied on the ER result.  I was hesitant making more enquiries, but decided that it was something that would always bug me if I didn't find out. 

I'm so thankful that I did as the test hadn't been done and it was explained to me that the supplementary report had indicated that there were micrometastases cells in the lymph - possibly due to dislodgement of cells in the DCIS during the biopsy in December - or possibly due to another invasive cancer elsewhere.  I'm hoping it's the former - but what is now really worrying me is the fact that my diagnosis was delayed by over 10 months - and apparently random cells from DCIS can still travel to lymph. 

The breast surgeon was extremely apologetic to me that the supplimentary report had been completely missed four months ago.  I'm shocked that I was the one that picked up on the anomaly.  I had to jump through hoops to obtain a copy of the reports, then do my own investigation and bring it to the attention of the experts.  Even my GP wasn't any assistance. 

So now I'm to have a full body CT and Bone scan next week.  Nothing much rattles me - but this is something that made me feel angry, upset, scared etc etc.  I'm hopeful that I'll only need hormone treatment and that will be it - and that I don't have another invasive cancer elsewhere.  What worries me is there is over 12 months between when I first discovered breast lump and I had mastectomy. 

The moral to the story is - get your reports, read them and ask questions.

5 Replies

  • mum2jj's avatar
    mum2jj
    Member
    12 years ago
    What a ride you have been on! I am glad it has turned out ok for you in the end. As Deanne said it will take a while to sink in and be able to restore your faith in your doctors etc. rest easy. Hugs Paula xx
  • Deanne's avatar
    Deanne
    Member
    12 years ago
    I was just wondering how you had got on earlier this morning. Good that everything has ended up ok and you don't have to have any other treatment. I think after the long process you have been through and the confusion over the pathology results it is natural that you will take a while to celebrate. Your confidence in your own health and in the medical profession takes a while to return after all this. Take care. Deanne xxx
  • Colliegirl's avatar
    Colliegirl
    Member
    12 years ago

    You have just experienced my worst nightmare.  I am really hoping that all turns out well for you.  With mistakes happening regularly it would do well for the medical profession to listen to their patients and act on their concerns as quickly as possible and with as much grace as they can muster.  As humans they will and do make mistakes but it would be better for them to listen and act than to do nothing and pooh pooh a patient's concern from the get go.

    I was brought up to believe you don't question the medical profession and accept what they say, but since having BC I've learnt the only one to suffer from that belief would be me.  I now try to be as proactive as possible and hope that others here will be too. It is your body and at the end of the day they (the medical profession) will move onto the next patient whatever the outcome. 

    All the best Linda in this rough journey you are going through. 

  • Bearteggie's avatar
    Bearteggie
    Member
    12 years ago

    I am so sorry that you have had this happen to you.  It is very scary and makes for a very stressful time.  I do hope that you only need hormonal therapy and that all your scans etc come back clear. 

    Best wishes

    Joy xx

  • Deanne's avatar
    Deanne
    Member
    12 years ago
    This is a very scarey story. I can understand your feelings and would feel the same in your situation. Thank goodness you have been proactive in following this up. I know that mistakes happen and doctors and medical staff are only human but there should be systems in place to ensure that results are followed up. It is a lesson for all of us though to make sure we get copies of reports as you say, and ensure that our doctors explain everything in them to us in person. At least we then know they have actually read them! Hoping that all is ok with your scans and that all you need is the hormone therapy. Fingers crossed for you! Deanne xxxxxooooo