ILC & MRI

kt1966
kt1966 Member Posts: 1,326
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi, just wondering if MRI is the be all & end all in diagnosing ILC? I know mammogram & ultrasound can miss it- does MRI miss it sometimes too? (especially with dense breasts)

I recently had an MRI which came back 'no abnormality detected in the left breast', but I have been feeling discomfort in it (twinges etc) & us showed a 'round' lymph node in the axilla that warrants watching.

Because my tumour markers have been up maybe I'm paranoid, but I really want another mastectomy at the moment. I don't think I'll be able to get one on public health unless something 'shows' & can't afford to pay for one myself!

How many of you have had a negative MRI but gone on to have ILC in your breast? 

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  • kar123
    kar123 Member Posts: 273
    edited October 2011

    Hi kt, 

    I had all three scans (Mammo, US, and MRI) and they all came back clear.  Nothing to worry about, not even an abnormality.  I finally got the biopsy I wanted in the first place and that is how they were able to diagnose ILC.  I hate to tell this story because I know that while I was going through all the protocols, I was trolling every site I could asking the same question and to see a story like mine scared the beejezus out of me.  Now I'm the one telling the story.  Good news is, I am almost a year out and doing well.

    All my best to you!

    KAR

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  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2011

    Thanks KAR. Well done you having that biopsy, amazing all the scans missed it when it was so large! Although not really, knowing ILC Frown sneaky as it is.

    That's what worries me. I am seeing my onc in about a month & keep telling myself it can wait till then, but I will be strongly advocating for a mastectomy for peace of mind. I really want to know if the markers have gone down too, now I'm on new drugs.

    I feel everyone thinks (Drs etc) I'm being paranoid not trusting scans- but I really like to know for sure what is going on. I really find it hard just trusting their trust in scans! If you know what I mean... I'd love to just relax and go with the flow, but its not really my nature.

     Undecided

    Dam*, & I really like my boob...& I miss the other one too. But at least I wouldn't be lopsided anymore. 

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  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2011

    Oh, KAR. How did you know that you had something there? Was it thickening & did the Drs feel it as well?

    I'm so gald you are doing well. Here's to many more disease-free years!

    Did you opt for a bilateral or unimastectomy?

    Smile 

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  • kar123
    kar123 Member Posts: 273
    edited October 2011

    I felt a major difference in the left vs the right.  The only way I can describe it was the left  was way more lumpy than the right, but not a hard lumpy , soft and squishy lumpy.  My nipple on the left side was also slightly inverted.  Everyone told me it was fibrocystic changes.  Even the Breast Surgeon, who is very well regarded. 

    I opted for bilateral mastectomy because I knew I couldn't rely on the mri and wouldn't feel confident in the scans.  The Pet did pick up the cancer, so it makes me feel better that came back clear everywhere but the nodes.  Anyway, I don't think we ever get over being paranoid and I think we have a right to be cautious and Dr's should understand that.

    Going for hopefully the last surgery for reconstruction and getting the finishing touches.  I like my new boobs better than the old ones even with the scars.  Just wish I didn't have to get them this way. :)

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  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2011

    Wow, sounds like you are doing well. I hope the last surgery goes well. Its so great that you love the new boobs.

    I might ask about having a PETscan (I think they are expensive so not offered too often). Unfortunately I don't have another boob to compare my left one to- the right one having been taken in 2003! I can't remember what it felt like... but my left boob feels like you described yours although more firm soft lumps. 

    If I do have a mastectomy I won't bother with reconstruction. I don't like the idea of more surgery and I'm quite happy to go flat at home & just wear small foobs out. I will miss having my own boobs tho - I guess it would be a bit of a grieving process to go thru.  

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  • nwest125
    nwest125 Member Posts: 240
    edited October 2011

    I had a Mammagram, US and MRI and the only thing that showed up was IDC, only after they went in for a re-incision on the IDC was the ILC found. I never felt a lump with either one. I chose for a BMX with no reconstuction.

    Nancy

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  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2011

    Thanks Nancy. The more info I have on cases like yours the more confidence I have to push for more tests/scans (PET). Maybe I'm not so paranoid after all!

    Was your IDC found on a regular screening mammo since you didn't have a lump? Just as well it was found or the ILC wouldn't have been.

    How do you find it not having reconstruction and being flat? I think I will be ok with it, its got to be better than being lop-sided as I am now. Smile

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  • nwest125
    nwest125 Member Posts: 240
    edited October 2011

    yes I went for my yearly mammogram and it was found then. I had 3 surgeries in a 6 week time frame and I just didn't  want to be cut on anymore. Most of the time I am ok with being flat, I wont lie and say I don't have a bad day every now and then , but mostly I am good. I wear my foobs when I go to work or church  or something like that but just go flat around home. That is another reason I decided on BMX was I could choose to go flat or wear my foobs. I like having a choice :)  Good luck in whatever choice you make.

    Nancy

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  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2011

    Thanks for your help, ladies Smile

    The more information I have, the easier it is to make decisions.

    I will have some things to talk with my onc about when I see him in November.

    Cheers 

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  • LoriL
    LoriL Member Posts: 185
    edited October 2011

    I found my lump, but it did not show up on a mammogram or MRI. The only thing it did show up on was an ultrasound. That is one of the main reason why I chose to have a bilat mast- I didn't feel I could trust mammogram or MRI for early detection in my healthy breast. And, I chose no reconstruction and have never regretted that decision. I'm super active, and I love not having boobs getting in the way. I wear my foobs if I'm wearing a clingy top, otherwise I don't bother. 

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  • LisaWade
    LisaWade Member Posts: 61
    edited October 2011

    I never had a lump in the breast with cancer I went due to a cyst in the left breast and they did a mamo and found IDC after my biopsy it was deemed IDCS and then after my lumpectomy I was told both of those were wrong and it is ILC... I have opted for the BMX  with no reconstruction and my surgery will be this Oct 17th, for the record I am terrified, but I know this is the right decision for me I want to see my little girls grow up and the thought of missing that terrifies me even more. My onco score was 11 so no chemo but I will have tamoxifin for 5 years - to be started as soon as I have recovered from surgery

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  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2011

    Hi Lisa. I can understand where you're coming from. It is scary facing cancer diagnosis & surgery.

    I hope it goes really well for you, I'm sure it will. We'll be thinking of you...

    I wish that I had had a bilateral mastectomy when I was first diagnosed, so I think you are making the right decision. I found Tamoxifen to be ok to take, I had few SE's. 

    LoriL- I like your attitude to foobs & boobs. That's how I feel, just got to convince the Drs- they seem to be less keen to lop my remaining boob off!

    Smile 

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  • LisaWade
    LisaWade Member Posts: 61
    edited October 2011

    thank you kt1966, and I know it`s tough to get the surgeon to agree to remove the so called `healthy`` breast mine was demading that I just keep having lumpectomies and I just said enough she isn`t too pleased with me but my oncologist is and I respect his advice to proceed with the BMX no recon.  I will be thinking of you as well thank you for your support and I truly hope all works out well for you. Please keep me posted

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