Is this ILC?

melevebos
melevebos Member Posts: 27
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I have had a distinct lump for over a year now. The lump is firm and about 1.5 - 2 cm. I was referred to surgeon who sent me for a mammo and U/S. Both were negative despite him saying that he was concerned about the feel of the lump. That was a year ago and he told me since U/S and Mammo were negative not to worry. Because I am 31 I didn't expect the mammo to be of benefit. Since that time I also now have a about a 3 cm area just below the lump that is thickened and hard, but not a "lump" per se. How do I get the doc to look into this further? I am un-insured so doctors are slim pickings. I have a family history of both breast and ovarian cancer but can not afford genetic testing for BRCA genes. HELP! I will also add that I have had chronic pain around the quadrant of the breast that the lump is in, that is non-cyclical. Again doc blows this off saying it is fibrocystic pain, but why just one breast and just one area???

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Comments

  • wallycat
    wallycat Member Posts: 3,227
    edited August 2007
    Hi and sorry you are joining us.
    I think I responded to your post in a different section but will repost some of it...
    Can you find another doctor? One who will take you seriously? My lobular had no lump, no mass, nothing on ultrasound, mammogram and neither my radiologist, mammo tech nor my breast surgeon could feel anything...breast mri showed a 9mm mass and they had to send me back for the breast MRI to do the biopsy as the ultrasound still could not find the mass that the MRI located.
    I had no thickening, no pain.....just a gut feel.
    I hope yours is nothing but I would not sit and wait.
    Find someone who will take you seriously and have a biopsy. It is really the only way to know.

    Best to you.
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  • nash
    nash Member Posts: 2,600
    edited August 2007
    I just responded to you again over on the Not Diagnosed board, but I'll continue over here.

    Taking the uninsured part into account, it's going to be harder to switch surgeons, as I advised in my last post over on the other thread. But unfortunately this guy is not giving your issue sufficient attention. You need an MRI, and then if there's a suspicious area on that, you need a core biopsy. It probably wouldn't hurt to biopsy the lump and thickening even if nothing shows on MRI just to be sure.

    I had both a lump and a thickening, and pain. Your's is hopefully nothing, but from what you're describing you absolutely have to get yourself checked out thoroughly. It drives me crazy when treatment decisions are driven by economics. I wish I had some advice on how to get around the insurance issue. Maybe if you post a separate thread on how to get good care w/o insurance, some ladies who are in that boat will have some good advice.
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  • rue2u
    rue2u Member Posts: 89
    edited August 2007
    Melissa,

    I would ask for a copy of the ultrasound and mammogram report. What do they mean by negative? My mammograms were considered "negative" because of the characteristics of the lumps that showed up. The radiologists thought I had cysts but the ultrasound did show that something was suspicious. Even the surgeon I was referred to suggested that I waited 6 months and have tests again but I asked for a biopsy which resulted in my infiltrating lobular diagnosis. Turns out it was multi-focal (several small areas in the breast). Hope you can get someone to help you but you can insist on getting a copy of the report to see what it says.

    Rue
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  • melevebos
    melevebos Member Posts: 27
    edited August 2007

    No cysts, masses or calcifications were identified. However the mammogram did note that the tissue in the upper outer quadrant of the left breast showed more "density" than the right. This is the area of concern. I have read that lobular carcinoma an appear on mammo as increased density especially in younger women, but again doctor says that the findings on mammo are not a concern.

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  • conniehar
    conniehar Member Posts: 954
    edited August 2007
    Yes, you need to get this checked out. My lobular tumor presented as a thickening. It was not seen on mammo or US. The radiologist felt it and recommended a biopsy. Prior to biopsy, the surgeon sent me for an MRI which finally showed the mass. It was 10 cm and mammo and US could not see it!!!

    I thought I read somewhere on another post about required care for those unisured, but it may have just been a right to a mammogram. I agree that you should post another post about being unisured to catch someone's eye in that situation.

    Good luck and let us know how you are doing!
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  • Valsul
    Valsul Member Posts: 160
    edited August 2007
    my tumour presented just like yours. including the pain, which everyone assured me ws a good sign.

    I don't want to alarm you, just that I resolved to get the message across that you insist on proper care. get it biopsied as soon as you can. Go back and insist on the proper care, insurance or not.

    Big hug
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