Could this be anything else but IBC

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Aello
Aello Member Posts: 5
edited September 2019 in Not Diagnosed But Worried

About six weeks ago I've noticed a pain in my right breast and one of my glands (milk ducts?) became sore to the touch. My breast was getting larger (in six weeks it grew larger about 20% appose to the left one) and when the pain somewhat subsided the internal itching started (not too much, but enough to psychologically drove me insane, since it is one of the IBC symptoms).

Of course I went to a doctor (two, to be exact) - one ultrasound showed 5 small cysts, while another us (done just a week later) showed nothing. Mammo also showed nothing. Both doctors considered the visual size difference in breast minimal and didn't think anything is of any concern about IBC... One of them has been a breast surgeon for 25 years and everyone I know keeps telling me I should trust her, but the problem is I simply don't.

I have pushed for a MRI and I got it next Monday.

My questions:

- if there aren't any skin changes, where should biopsy be done? Will MRI show that?

- if MRI by any chance doesn't show anything, what should I do?


I'm 42 years old and so far had no medical issues. Right now I'm feeling like in some alternate reality, where I'm the only one who's sure something is wrong and everyone around me thinks I'm just some paranoid hypochondriac who googles too much ...

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2019

    If there are not any skin changes I'm not sure I understand how you are arriving at IBC, and in six weeks IBC would not have subtle signs. IBC progresses rapidly, in hours if not days..

    If the MRI shows nothing I would trust what the breast surgeon told me.

  • djmammo
    djmammo Member Posts: 2,939
    edited May 2019

    Aello

    Be sure to let us know what the MRI shows.

  • Stephy01
    Stephy01 Member Posts: 11
    edited May 2019

    I had my MRI and everything is normal thank god.

  • Aello
    Aello Member Posts: 5
    edited May 2019

    @djmammo: why so many mammos miss IBC? Is it because it genuinely can not be seen in some cases, or is it because radiologist isn't trained enough to spot IBC clues?

  • djmammo
    djmammo Member Posts: 2,939
    edited May 2019

    Aello

    Good question. IMO the degree to which the internet emphasizes this one concept is ridiculous. Overblown, overhyped etc. Here is an article on that subject: https://www.ncbi.nlm.nih.gov/pubmed/8115635

    Early findings on mammo (if there is not obvious mass) consist of increasing prominence and density of all the supporting tissues in the breast compared to the other breast, giving an overall hazy appearance to the image. I can see this may be a problem if there are no prior studies for comparison, and/or only the symptomatic breast is imaged. The skin changes are usually what bring people to imaging so that gives us a clue to what findings we are looking for. US shows the same, a diffuse haziness to the images from the swelling and edema in the skin.

    Of course all breast imaging is dependent on the experience of the radiologist reading the studies so it pays to find one that does nothing other than breast imaging. We are all well aware of the findings for IBC and that early clinical symptoms mimic a variety of benign conditions like rashes, fungal infections, mastitis, etc.

    Doctors like your PCP are trained to think about the more common causes for these things rather than jump to something rare right away. If someone comes in and says I have had this rash for 6 weeks and it wont go away they will treat for a skin condition because if it were IBC, by that time it would be apparent from across the room. If someone comes in and says my skin looks funny and its getting worse and spreading every day then that's different. The history has to fit the clinical findings to come to a reasonable differential diagnosis.

    Keep us in the loop.


  • Aello
    Aello Member Posts: 5
    edited May 2019

    So... a difference between a dense breast tissue and early IBC on mammo would be based on comparison to the other breast or earlier mammo image?

    Because if I understand correctly the overall hazy appearance is either IBC or just dense breast tissue (I know I'm over-simplifying this, but still ...). At our breast clinic mammo images are read by breast surgeon and then they circle to two or three more radiologists separately and then they give you final report.

  • djmammo
    djmammo Member Posts: 2,939
    edited May 2019

    Aello

    So... a difference between a dense breast tissue and early IBC on mammo would be based on comparison to the other breast or earlier mammo image?

    Here are images that demonstrate what I mean. The image on the left is the breast with IBC. You can see there is a clear difference in the appearance of the two breasts. The one on the left is hazy and "smeary" looking plus there are the added findings of overall enlargement, skin thickening and an enlarged lymph node. Its hard to see in this small image but the supporting tissues (linear densities in the fat) become thicker.

    These findings have to start somewhere. I assume that in its very earliest stages cancer cells are present but nothing is seen. So between seeing nothing, and seeing the findings in these images, depends on when the images are acquired. If the images are taken at a time when findings are still extremely subtle I have to postulate that the changes may only be evident when compared to prior of to the other breast.

    This is clearly the case with invasive lobular carcinoma (ILC). It does not form a mass like invasive ductal (classic spiculated mass). It presents as a new area of density that looks a lot like normal tissue. It can be almost impossible to tell the presence of very early ILC with out priors or comparison with the other side which is where the concept of the "asymmetric density" comes in and why we call people back for additional studies when we see it.

    We don't see patients for a diagnostic study labeled "rule out IBC" unless a patient has already presented to their doc with symptoms. But if someone with extremely early IBC comes through for a screening exam at a time when there are no mammo findings it will likely be passed as normal and will eventually be called a "missed cancer" .

    image

  • Aello
    Aello Member Posts: 5
    edited May 2019

    Thank you for your explanation!

  • Aello
    Aello Member Posts: 5
    edited September 2019

    Hello,

    I just wanted to update my post - so, basically my MRI came back perfectly normal for my right breast (the breast I was having issues with), but showed a small tumor in my LEFT breast (which was totally without any symptoms or palpable lumps, or anything). I had biopsy and came back negative, but diagnosed as adenosis tumor ... However, it needs to be checked in 3 months time (which is about now).

    My right breast is still slightly larger than my left, but all the weird sensation is gone (no pain, no itching, ...)

    All in all, I'm good, but certainly doing my regular check-ups.

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