Felt by all but not seen. ILC concern?

Options
AmazonCatwoman
AmazonCatwoman Member Posts: 36
edited September 2016 in Waiting for Test Results

I don't know how to be short and sweet, lol.

I'm 27. Earlier today I had my mammogram as well as an ultrasound. The techs and doctor all felt the area of palpable concern, though nothing at all showed on any of the imaging. While I am obviously glad that nothing of obvious concern was visible on US and Mammo, I still have this hard area on my breast with no definitive answer given as to what this is. I was given possibilities like could be this or could be that but I am not comfortable with just accepting that nothing is wrong without knowing what the hard mass on my breast actually is. Would you be?

While I am comforted by the fact that a number of things are in my favor, it is not enough. I have a hard, palpable mass at 12 o'clock on my right breast. It's not what I would call a lump and it is like nothing felt anywhere else on either breast. It is thick, hard and immobile but definitely more spread out and flat with some crags than any kind of distinct lump you would call a marble or pebble or things like that most people talk about. It's maybe an inch and half or so. It's hard to tell for sure because part of it I can feel a definite edge but then other sides seem to go into the surrounding tissue. It doesn't hurt touching it all. I found it 3 weeks ago during a self-breast exam. After the first couple days, I have basically left it alone, other than brushing my hand lightly over it every few days, hoping maybe it magically disappeared. However, now, I can spot the area even upon visual inspection alone and absolutely feel it without even trying. About a week after finding it I began getting occasional piercing pain on this breast but more on the upper inside…stop what I'm doing and clutch my breast in excruciating pain kind of pain. In the past week or so I just feel a kind of pulling, pressure and heaviness coming from the area in question and perhaps a bit of a stinging/tingling as well.

TBH, my greatest concern would be ILC. Though I know stats and facts on ILC are in my favor, I have read enough on here and elsewhere (damn you Dr. Google, I know) to know that ILC is typically hard and flat like mine and often doesn't show on mammograms and ultrasound, also like mine. I have also known someone diagnosed in their 20's as well. I certainly hope this is not the case but I would hate to rule it out being as sneaky as it is.

I want a biopsy. Core needle biopsy I would think. Am I crazy? Do you think there is any chance of insurance covering this when imaging shows nothing? Is there a benign condition that this CLEARLY sounds like that wouldn't show up on any imaging? I was recently approved for Medicaid through United Healthcare Compass Plus after finding out I don't have enough work credits to qualify for disability despite some disabling health conditions (ehlers danlos syndrome, hemiplegic migraines).What would your recommendations be? I think I am remaining fairly calm considering, but still, I feel like I need to advocate for myself and like I need a definitive answer about this hard mass.

Comments

  • AmazonCatwoman
    AmazonCatwoman Member Posts: 36
    edited July 2016

    Any ideas, recommendations or words of wisdom

  • 614
    614 Member Posts: 851
    edited July 2016

    What you are going through is terrifying.  However, since nothing is seen on your mammo and sono, there may not be anything that can be done at this time.  This is because insurance may not cover any other tests or more invasive procedures.  I would call my insurance company and ask questions.  I would also go to another doctor for a second opinion and request a follow up mammo and sono in 3 or 6 months.  You must be your own advocate.  Good luck.

  • Optimist52
    Optimist52 Member Posts: 302
    edited July 2016

    MRI is the best tool available for ILC if you are able to have one. My second ILC was missed for many years on mammogram and US. This is the unfortunate fact for those of us with ILC.

  • 614
    614 Member Posts: 851
    edited July 2016

    Dear Optimist:  Good point regarding MRI's.  I was diagnosed with pleomorphic ILC.  I am always worried that if I have a recurrence that it may not be viewed on imaging because ILC is so sneaky and hard to detect.  I am sorry that your second ILC was missed for years.  Good luck.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Hi AmazonCatwoman:

    This is sort of a puzzler. Please request copies of the radiologist's original written reports from your mammogram and ultrasound. These reports should include a "Bi-Rads" score and any recommendations for further imaging and/or for 3- or 6- month follow-up. Maybe they will recommend further imaging by MRI in your case. If visible by MRI, an MRI-guided biopsy would be a possibility.

    I could be totally wrong, but I was under the impression that core-needle or vacuum-assisted biopsies are typically guided by imaging to localize the area of concern and attempt to ensure sampling of the suspicious area. Another option might be fine needle aspiration:

    http://www.insideradiology.com.au/pages/view.php?T_id=59#.V3lKE1dlnBI

    Hope you get some answers.

    BarredOwl

  • AmazonCatwoman
    AmazonCatwoman Member Posts: 36
    edited July 2016

    Thank you all for your responses. I appreciate you taking the time.

    Optimist52, so sorry to hear yours was missed. I've seen a lot about the sneakiness of ILC even with supposedly good imaging. I can only imagine how hard hat has been to deal with. I guess that's part of the reason why I am hesitant to go for MRI because if it shows nothing, then I still don't know what this is and this is something, even if benign. Is there any way an MRI would miss this? Or could it give me a better idea of what it is if not cancerous?


    It sounds like y'all would suggest MRI before a biopsy though? I was given a BIRADS 1 because they saw nothing at all wrong. I can't get the mammo report for a couple days but the US says "the breasts are composed almost completely of fat. No spiculated mass, architectural distortion or suspicious microcalcifications are present, particularly in the area of palpable concern". Also, "Focused ultrasound in the area of palpable concern shows no cyst or solid mass. The underlying fibro glandular tissue shows normal sonographic features." All good things of course. Impression: "No mammographic or sonographic suspicion for malignancy. Annual mammography is recommended, beginning at age 40. Interval diagnostic examination scan be performed if clinically indicates prior to age 40."

    I was just told, could be fibrocystic breast changes, could be fat necrosis (jokingly asked if I got elbowed playing basketball since I'm tall, 6'2"), could be some problem with the muscle (idr exactly what he said for that one), or could be because you've lost weight. No recommendation for further imaging. No recommendation for 3-6 month follow up. It can be very easily felt though, but hard and much more flat and thick and nothing like the rest of either breast and because it is higher up at the 12 o'clock position when I put my arm up behind my head like you would during part of a self breast exam, which is what I did and how I discovered it, I can actually look down at my breast and see where it is in my breast now because it is raised there, not that the skin itself is raised but that you can tell there is something underneath that has pushed out enough to begin to show on the surface. I don't know much about biopsy tbh. I just assumed that some kind of biopsy would be easier and cheaper, especially since the area of concern is more obvious. Perhaps not though. I do need to call my insurance this week and check back in at my gyn office who referred me after feeling it. I'm just not looking forward to dealing with insurance though because I expect to hear something I don't want to hear. Grr. I suppose it's a necessary evil though.

    Thanks again for your replies. I hope you all have a happy 4th of July if celebrating in the states.

  • 614
    614 Member Posts: 851
    edited July 2016

    Dear AmazonCatWoman:

    I am so sorry that you are dealing with this. Feeling a lump is terrifying. The reason that I said to check with your insurance company is to see what may be covered. Maybe your insurance would cover an MRI and maybe an excisional biopsy would be covered. An MRI is the most sensitive imaging test and MRI's would be more likely to find ILC than a mammo or a sono. However, doctors may be hesitant to order an MRI unless there is an indication that an MRI is warranted - through finding something on a mammo or sono. Since you can feel and see this lump but nothing is viewed on imaging, you may want to meet with a breast surgeon to see whether an excisional biopsy could be ordered. However, many doctors may not want to perform surgery unless they know that something is present.

    I wish you the best of luck. I hope that the area is benign and that you are able to find out what it is. I also hope that this will not cost you a ton of money in medical bills.

  • Chadnott
    Chadnott Member Posts: 6
    edited September 2016

    Hello AmazonCatWoman

    Not sure if you are still on here are if you found the help you needed. I have a lump in my right breast and have no insurance. I was blessed to haverify had a mammogram, ultrasound done which showed nothing, then went to my oncologist which is also free felt the lump again and scheduled me a breast MRI for the next day it showed some issues but nothing major in concern, my oncologist called me that Tuesday had to wait over the weekend. She had scheduled me to see a BS for 9/6. She also could see the lump sticking out of my skin and feel it, she did say it's not that hard but felt funny. Lumpectomy scheduled for Wednesday 9/14. With saying all of this it is programs out there that will help you get the test you need. I am in Georgia and my oncologist is with Ga. Cancer Specialist and Northside Hospital does all my procedures at no charge. Good luck and sending prayers.

  • Kcabrera
    Kcabrera Member Posts: 44
    edited September 2016

    I am going through a very similar situation. I have a hard flat mass (I say flat because of the shape, but it also feels like it has some lumps on it) on the outer edge of my right breast. One edge of it is easily felt and the other just kind of blends in with the surrounding tissue. I can feel something similar to it on my left breast but it is MUCH smaller. I had a mammogram and US done yesterday. Ultrasound showed nothing but the mammo showed asymmetry so they did spot compression. I ended up being rated Bi Rad of 1 on left breast and 2 on right breast. The radiologist also stated on my report that and MRI would be suggested if there is a strong clinical concern. I have set up an MRI, not sure when it will be yet. I should also note that my breasts are very dense. I'm terrified that something is there and the US and mammo missed it. I am only 29. I hope we both get some answers soon! Best of luck!

  • 614
    614 Member Posts: 851
    edited September 2016

    Good luck to both of you. Very stressful.

Categories