Not diagnosed- seeking reassurance

Mdmommy
Mdmommy Member Posts: 16
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I know I am not in the right forum, but I've posted in the not diagnosed but worried board with no further input. I'd really like some advice or reassurance on how to proceed.

In November, I went in for my yearly mammogram screening. I'm 41 and had my baseline done the previous November. At my baseline, diagnostic, spot compression views were done on my left breast and I was told I had dense breasts (type 4). I was super nervous about the diagnostic views since I'd been experiencing deep stinging, tingling pain in that breast for the last couple of months. Thankfully, the radiologist didn't see anything needing further examining and sent me away for a year with my Bi-rads 2. 

Fast forward to this last November. I scheduled my mammo. Again, the left breast needed spot compression. Not worried, everything was great last time. Then, called back in again for additional spot compression and a true lateral view. This time sent home with bi-rads 3 and to follow-up in 6 months. Since then, left side continues to experience pain. I received a copy of the full report in the mail.

It reads:

"Spot compression MLO and true lateral views of the left breast were performed as a follow-up to the screening portion of the study, demonstrating a density definitively especially on a true lateral view most likely breast tissue. As a precaution, 6-month follow-up advised."

Impression: there is asymmetrical density seen in the left breast posteriorly for which a 6-month follow-up is advised as a precaution.

The area where the true lateral view was done is the same area where my pain seems to originate. Needless to say, I've been extra diligent in my SBE.

Over Christmas, my hubby noticed a lump. It wan't there in November, I hadn't noticed in SBE a few weeks earlier, and didn't show on mammo screening in Nov. But, I felt it too. We watched it for a month, but when it didn't go away, I made an app't with PC. She felt it, thought it might be a cyst, but sent me for diagnostic testing since it was new. Today,  I had a 3D mammogram and diagnostic u/s with the order written for diagnosis of palpable lump.

The techs for both procedures could easily feel the lump, but neither found/saw anything on the scans. The u/s tech even commented, "that's weird. I feel it; I know something is there. I just can't find it with the u/s. I'm not seeing anything."

Sent home with "normal" results and told to follow-up with my PC to see if further investigation is needed.

Now what?

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Comments

  • Lily55
    Lily55 Member Posts: 3,534
    edited January 2014

    i suggest you insist on an MRI just to rule out out Lobular cancer that often cannot be seen on mammograms or ultrasound...it also tends to grow in lines or sheets rather than lumps.......and assymetry is one possible indicator but please dont be alarmed, there are many other things it could bethat  are not cancer.  Listen to yourself and dont stop until you have a clear idea of what is going on in your breast.......good luck

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  • toomuch
    toomuch Member Posts: 901
    edited January 2014

    Mdmommy - I agree with Lily that you should have more done. Is it possible for you to make an appointment with a breast surgeon? If the lump is palpable, they can do a biopsy even if it doesn't show up on ultrasound. Also, you say that the techs didn't see anything on the scans but did a radiologist come in and ultrasound your breast before they sent you out? Has the radiologist read the mammogram yet? The techs may be good but they aren't trained to see subtle nuances and shouldn't be giving you a report. 

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  • vbishop
    vbishop Member Posts: 616
    edited January 2014

    Mdmommy -  I agree with the other ladies.  Be diligent, be aggressive when it comes to your health.  Always check if something seems different.  My hubby and my ob/gyn had trouble feeling my lump, but I insisted.  It saved my life.  I am impressed that you perform self exams and seem to be in tune with your body.  Continue along those lines - it will save your life one day.  Best of luck. 

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  • Momine
    Momine Member Posts: 7,859
    edited January 2014

    Insist on MRI. INSIST! Probably it is nothing, but it needs to be checked out further.

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  • Mdmommy
    Mdmommy Member Posts: 16
    edited January 2014

    too much - 

    The radiologist did not come in at all. The tech took all the images and passed them to th radiologist. She came back later saying I was good to go. The radiologist didn't see anything and the tech gave me an "introductory report" (a form letter, listing the bi-rads categories) stating it was a normal mammogram/ultra-sound, finding no evidence of cancer. It was not specific to my lump or situation.

    My PC should have the full report today. She said they normally have them within 24 hours. I will ask her about a BS and/or MRI. 

    Thanks for all the support and advice.

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  • Mdmommy
    Mdmommy Member Posts: 16
    edited January 2014

    I talked with my PC today and went over the report. The report said it found no significant changes from my Nov. mammogram and no indications of cancer. It reported it as a normal scan. Recommendation to resume normal yearly screening. Basically, there was nothing there - didn't mention a cyst, didn't mention fibrous tissue, dense breast tissue, nothing. I told my PC I was not comfortable with that. Something is there. Yes, statistics are on my side for normal, but I want to know, not guess. I told her felt like the report was a contradiction. I had to sign a form stating I knew I had extremely dense breasts and understood that mammograms/ultrasounds could miss things, but the radiologist's report doesn't mention it. PC felt we should do a 3 month clinical recheck and re-evaluate then. Do I wait the three months or push for answers now?

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  • KSil
    KSil Member Posts: 56
    edited January 2014

    Mdmommy, go see a breast surgeon who has experience finding cancerous lesions. Radiologist told me my ultrasound looked fine, but breast surgeon did ultrasound and saw a tiny blood supply that just didn't look right to her. She did a biopsy that day and turned out to be lobular carcinoma. Sent me for an MRI and that showed a 2 cm lesion. After surgery the tumor was a whopping 6 cm. not to scare you...it could be absolutely nothing, but do insist on an MRI, and go to a breast surgeon. You will be relieved if it turns out to be nothing, and you won't be kicking yourself later on if it turns out to be something that could have been treated at an earlier point in time. 

    Karen

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  • lekker
    lekker Member Posts: 594
    edited January 2014

    I've had two situations post BMX where the ultrasound tech couldn't find the palpable lump but the radiologist could (both were benign).  If you have a palpable lump, and they can't see anything on mammo or US, I would think the next step is MRI.  At the very least I would ask a radiologist (not a tech) to do a repeat US.  You all can feel it so you know it's there - it seems odd that they would accept the imaging over what they can feel for themselves. 

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  • Brioche78
    Brioche78 Member Posts: 37
    edited January 2014

    I would defenetly push for a MRI. Better be safe then sorry!

    Best of luck

    Don't be scared of insisting its your health you are your best advocate follow your instinct !

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  • toomuch
    toomuch Member Posts: 901
    edited February 2014

    Mdmommy - I agree with the other ladies. I had many ultrasounds over the years preceding my BC diagnosis. The radiologist came in at the end of each ultrasound and looked specifically at the area I was concerned about. If you have a palpable mass, it is unfathomable that the radiologist didn't sono the area herself. A palpable mass can easily be biopsied by a breast surgeon. I would insist on a biopsy, because even an MRI can miss ILC. And a biopsy result will give you peace of mind.


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  • wallycat
    wallycat Member Posts: 3,227
    edited February 2014

    I also suggest an MRI.  I had clean mammograms and even when they knew where my cancer was, the ultrasound showed nothing.

    INSIST on an MRI.  It will give you peace of mind.  Yes, there can be false positives, but rarely false negatives.  I would opt on the side of over diagnosis especially since you indicated dense breasts.  Call your insurance company and see if you need a preauthorization for an MRI or if you can just find a doc to Rx it.  My insurance company said I did not even need a preauth; just to go have it done....

    Best to you.

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  • Mdmommy
    Mdmommy Member Posts: 16
    edited February 2014

    Thanks everyone. I have an appointment with a breast specialist on Feb. 14. He has requested copies of all previous mammograms, ultrasounds and reports. I picked those up on Wednesday. It was interesting reading the actual reports (I'd previously only been given a copy of the Nov. 2013 one.) I wish radiologists would talk with the patients and explain things rather give ambiguous "layman's" reports. I actually felt a little better after seeing the full reports. Hopefully, the BS can reassure me as well.

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