Just diagnosed

geocachelinda
geocachelinda Member Posts: 223
edited June 2014 in ILC (Invasive Lobular Carcinoma)

After one year I have been finally diagnoses with ILC.  Right now I am rated at a T2 +1 or T/B.  I will be getting a mastectomy.  I am going to my specialist on Monday to get all the details.  This has been an ongoing battle for over a year with my first surgeon basically telling me it was nothing and he didn't know what the mass was despite the fact that you could feel it, my nipple was inverting and I had bloody discharge.  All the tests came back negative and that was what he was basing it on.  One of the reports suggested that an MRI would be helpful but he never ordered one.  I finally got last month.  Things were delayed because I lost my job over the stress (had a nervous breakdown) and therefore lost my health insurance.  The MRI showed it right up and subsequent biopsies showed the carcinoma.  I did have one biopsy before where the Dr. took one sample and it was negative.  I have consulted a lawyer and am waiting to see if they will take my case based on failure to diagnose or medical neglect.  This surgeon that I first saw does not take notes or dictate notes either because when I asked for a copy of my records,  all I got were lab reports.  I was called and asked if I wanted a letter dictated to my specialist.  I told them no to forget it, it is too late now.  So he can dictate a letter to my lawyer instead. 

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Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2011

    What a shocking story!  And it certainly sounds like your original surgeon was inept at best.  But I find it hard to believe he doesn't make any notes.  On first read, it sounds more like his office might be keeping those from you, rather than not having any.  I can't imagine how a doctor can keep track of his/her patients with just a file of lab reports.  It sounds like having a medical malpractice attorney look into this is entirely reasonable, partly to prevent it from happening to anyone else.  And more importantly, I hope & pray your bc was still caught very early, in spite of what sounds like possibly some serious missed cues in your care.   

    I'm glad you've shared your story with us, and I also hope that you can turn what happened over to an attorney you trust to take care of it, so that it will not continue to drain your energy & spirit.  Obviously, you will need 100% of your energy to fight your bc now.   (((Hugs)))       Deanna

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  • mdoak
    mdoak Member Posts: 219
    edited February 2011

    This is so upsetting!!! Woulld you mind saying more about what your symptoms are? I'm in the middle of all the doctors telling me it's perimenopausal changes (despite the fact that I have been on hormone replacement therapy for five years) and can't get anyone to take me seriously. I do finally have a screening MRI scheduled for June 20th, since I qualify as high risk.

     Take care of yourself.-- Melissa

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  • geocachelinda
    geocachelinda Member Posts: 223
    edited February 2011

    Hi I started with a lump/thickened area just above my left nipple and my nipple began inverting.  I was also having bloody discharge and an area closer to the armpit which turned out to be a lymph node that also had cancer in it.  Neg mammo and ultrasound this past spring.  Neg biopsy but they only took one sample.  Took the MRI to diagnose and more biopsies, and the first surgeon never ordered one (MRI) despite it being suggested on one of the pathology reports.  I have a stage 2 tumor plus 1 lymph node so far.  So I will be getting a mastectomy on that breast.  Waiting to see Dr. Monday to see if she recommends a DMX.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited February 2011

    Only taking one sample at biopsy is negligent - sue the arse off him!!!

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  • geocachelinda
    geocachelinda Member Posts: 223
    edited February 2011

    It wasn't him, it was the radiologist Dr that did that, personally I think she missed!

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  • geocachelinda
    geocachelinda Member Posts: 223
    edited February 2011

    I had my appt in Albany today and my surgery is set up for Friday morning.  My Dr. went over everything including the actual surgery, drains, follow up etc.  I am going to need radiation and chemo after.  The size of the tumor has been upgraded to a Stage 3 N 1 ER+/PR+ don't know the HER yet. I will get the lymph nodes removed also seeing as one is already involved.  She said this has probably been growing for a long time and has been undetected until now.  She also said I can get reconstrucion after my radiation and they will give my other breast a "lift" so they match as close as possible! 

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  • Gitane
    Gitane Member Posts: 1,885
    edited February 2011

    geocachelinda,  I am sure it is a relief to finally have this plan in place.  I had both breasts removed, and I have recovered very well from the surgery.  It's good to hear your doctor went over everything so carefully.  Let us know how you are doing.  Hugs, G.

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  • geocachelinda
    geocachelinda Member Posts: 223
    edited February 2011

    Going in tomorrow, had pre-op yesterday.. I'm nervous as heck.  I'm going to have my husband take some cheesecake photos tonight before one of my girls is gone!

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  • Gitane
    Gitane Member Posts: 1,885
    edited February 2011

    geocachelinda,  I know how nervous I was.  It's a very emotional event.  Photos sound good.  I'll be thinking of you tomorrow, as will many others here, I'm sure.  Hugs.  G.

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