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Palpable area of thickening but negative mammogram/ultrasound

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kim575
kim575 Member Posts: 18
edited January 2021 in Not Diagnosed But Worried

Hi all,

I recently discovered a weird, thickened area in my right breast that is totally different from the same area on my left breast. I went to my ob/gyn who was unable to find a specific lump but did say she felt an area of dense tissue/thickening so she sent me away with a script for a mammogram and ultrasound.

I had the mammogram and ultrasound on Tuesday. The ultrasound tech seemed new-ish, she did not try to find the area herself and although I tried to point it out to her, I wasn't even sure if I was in the right spot because it's a large area and I have HUGE breasts. Because I can only feel it when I am sitting up or standing, she did the ultrasound with me in a sitting position and then took a couple of quick swipes with me laying down. The whole thing was very quick and honestly I felt rushed. She came back in with the radiologist who had her do a couple of more takes and then told me that they don't see anything and my mammogram was normal compared to the last time. She did not give her opinion or tell me what the area might be or offer any information or real guidance. She then told me that if I'm concerned they recommend following up with a breast specialist. I left feeling like a crazy person. I absolutely feel an area that is disproportionate when compared to my left breast that is new and different. I also had a one time occurrence of clear fluid come out of the nipple on that side, which the ultrasound tech did spend more time on. It's frustrating because this was at Penn Medicine, which is one of the best hospitals in Pennsylvania.

My ob/gyn also ordered some bloodwork including prolactin and thyroid levels, but she told me the prolactin has to be done without any touching of my breasts for 72 hours prior??? So no sex, no letting water hit them in the shower, etc. So, needless to say I haven't had the test done yet. I was also waiting on the mammogram results first.

Any advice?? Should I get a second opinion? Go see a breast specialist?? I know that some cancers don't show up on radiology tests. Thanks for reading!

Comments

  • beesie.is.out-of-office
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    My advice?

    Wait until you can read what the radiologist actually writes in the mammogram and ultrasound report. See if any reference is made to the area of thickening, and see if any follow-up is suggested. Then discuss with your ob/gyn to see what she recommends.


  • kim575
    kim575 Member Posts: 18
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    I received a letter on the patient portal saying that no evidence of cancer was found and a date for my next mammogram. I am hoping that they actually put the report on the portal. They have in the past so I don't know why they wouldn't this time.

  • kim575
    kim575 Member Posts: 18
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    I should add that I am 45 years old and I have no history of breast cancer in my family.


  • alicebastable
    alicebastable Member Posts: 1,945
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    The way you describe the ultrasound is exactly how it should be done. The technician checked the written order and verified with you the area of concern before starting. Then she did the u/s with you sitting and laying down. If they couldn't find anything on the ultrasound, there wasn't anything for the radiologist to tell you. She recommended that you see a breast specialist if you still have concerns. That is exactly what she should have said. She can't diagnose anything that isn't on the ultrasound.

  • ammie
    ammie Member, Moderator Posts: 7
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    What did your mammogram report say? If your gut feeling is that something is wrong, and you didn’t get an adequate explanation for what you are feeling, I think you should consult with a breast specialist. The specialist should be able to determine whether you are feeling fibrocystic tissue or something else that may be benign, or whether you need to go in for further diagnostic testing.

  • kim575
    kim575 Member Posts: 18
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    Hi Ammie,

    I didn't get my report yet. Been hoping they would upload it to the patient portal before Christmas but doesn't look like that's going to happen. They did write a generic letter saying I didn't have anything concerning and when I should go for my next mammogram. I just would have liked some more information as to what this could be that I feel. I didn't leave feeling satisfied and I felt rushed or like my concerns weren't important.



  • hannah1962
    hannah1962 Member Posts: 9
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    Hi Kim575,

    I had an experience like yours, and I recommend you follow up with a breast specialist. Here is what happened to me. I felt an area of thickening, but nothing showed up on mammo or ultrasound. A couple years later, I suddenly noticed a very uneven (I would even say jagged) small lump in the same region. Getting that worked up, it still did not show on mammo and barely if at all on ultrasound. I have lumpy-bumpy breasts and the region with the palpable thickening and new lump looked benign to the radiologist who was there for the exams and workup.

    For the later workup (not the first one), I was sent to a place where they do three exams all on the same day: mammo, ultrasound and biopsy. I believe I was sent there due to the jagged quality of the lump and because of the history perhaps? Based on me having a palpable lump it was certain I was getting it biopsied there no matter what showed up or not. Long story short - the doctor there was shocked when pathology came back with ILC. I have lobular carcinoma and they make up about 10% or 15% of breast cancers. They are notoriously difficult to see on imaging and they often present as an area of thickening rather than a distinct lump.

    My final surgical pathology indicated extensive in situ lobular carcinoma in addition to the small invasive component.

    Had mine been discovered sooner, I would have been offered at the least estrogen blockers, which would have decreased my risk of developing a serious invasive cancer. I really wish mine had been discovered at that stage, not after it became invasive. Incidentally, lobular in situ carcinoma is technically not considered cancer but a risk marker of high risk. I have no family history of BC and I breast fed my three sons - so I thought I was not at risk - big surprise to me getting it.

    I am now two years out from the surgery for the invasive cancer (I had it two days after Christmas in 2018). I'm dealing with all the false alarms of being post-BC. A persistent cough sends me for imaging. Is it mets? I've been through three rounds of these kinds of checks. I'm not complaining, as I appreciate the excellent care. However, I wish my lobular carcinoma had been caught when in situ, and I feel an opportunity was missed.

    It is normal to feel timid when the imaging looks fine - but don't feel embarrassed, and make sure you get this worked up all the way. If you feel something, I strongly advise you to get it checked by a breast specialist. If it makes you feel more comfortable, tell them you know someone with a lobular carcinoma that was invisible on all the imaging.

    At the least, they will probably watch you more closely, which is a good thing. The lobular cancers (that tend to go undetected on imaging) are slow growing - thankfully. I would trust the breast specialist.

    Good luck, and try not to worry -just get it checked/followed properly.

    Hannah

    PS I am editing to add the following:

    Of course, for every person like me who developed BC, there are many, many more who felt a thickening and did not develop any cancer at all. None of them are on this board. Sorry I replied in a hurry - I did not mean to imply you have in situ anything. You most likely are fine and will be fine without seeing the breast specialist. If you decide to wait and return in a year for another mammo, that will probably be fine too. Sorry if my reply was insensitive. I wish you all the best.

  • kim575
    kim575 Member Posts: 18
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    Hi Hannah,

    Thanks for your thoughtful reply. I appreciate you taking the time to write all that. I did get the report back yesterday and it basically says that there is no change from previous mammograms. There is some intramammary lymph nodes in my left breast (not the side I'm having the issue with) and scattered areas of fibrodensity in both breasts. It said I had trouble identifying the area of concern, which was not really true, it's just that there isn't a single lump but more of an area of thickened tissue. Neither the tech nor the radiologist tried to find it, I'm not sure if they normally do that or not but it would have been helpful in my case. The ultrasound seems to have been done mostly in the 10-11 o'clock area, which unfortunately is not where I am feeling the thickening. I think that it's closer to the 8-9 o'clock area. I can feel it when I hold my breast in both hands and press top to bottom, if that makes any sense. They did put in writing that they recommended I follow up with someone if I feel I need to so I am following up with a breast surgeon/specialist and am planning on calling around first thing Monday morning.

    Quick question for you, what did your area of thickening feel like? My left breast is squishy and I don't really feel anything at all but my right breast feels fuller/thicker in the same area, like something is in there. It's frustrating because it's hard to describe and I think I had a hard time verbalizing it at my appointment. I kind of assumed they would know what I was saying.

    Thanks for your help, I appreciate you listening.

    Kim

  • hannah1962
    hannah1962 Member Posts: 9
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    Hi Kim,

    My invasive cancer was in my left breast at the 7 o'clock position (so on the inside - equivalent to 5 o'clock on the right breast). The area of thickening spanned around 5 o'clock to 7 o'clock, and it seemed slightly shelf-like (somewhat flat on one side but round on another side, like a small hotdog sliced in half to become thinner while retaining its full length, and then embedded in my breast in a curved way so it was not too obvious). My left breast also felt heavier than before, but I also wondered if it was my imagination. Knowing what I do now I can confidently say it was NOT my imagination - a later mammogram showed increased density in the left breast compared to the earlier mammograms.

    I shared my concerns about the new area of thickening when I noticed it with my OB doctor. It was the first time I had ever mentioned anything like that to him, and he had been my doc for 15 years. He did a breast exam but then dismissed my concerns saying all felt normal to him. The person who did the screening mammogram did not bother to feel for any lump, even though I told her there was an area I was concerned about. It bothered me a little that she did not place a marker where I felt a lump (I thought that was standard practice). Subsequently the radiologist came out to tell me my mammo was normal. When I mentioned the area I was concerned about, I was actually lectured about "anxiety" by the radiologist, and then dismissed. They told me my mammogram looked fine so I was fine. I don't think arguing with any of those doctors would have helped at all. I just needed to see a breast specialist. I believe the breast specialists (or breast cancer surgeons) know better what to look and feel for when examining breasts.

    I hope that info helps.

    Hannah

    PS I did not mention above that I had a sonogram too, since my breasts are dense. Both looked normal and the radiologist and the assistant who performed the ultrasound both seemed to think I was just an anxiety case.

    Even later when I was biopsied because of the new jagged lump, neither the mammo nor the sonogram appeared worrisome. I've been told this is very typical for lobular cancers. Luckily though they are also very slow growing.


  • kim575
    kim575 Member Posts: 18
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    So I am going to contact a breast specialist today. New symptoms have appeared in the past 2 days, burning feeling throughout my breast, mostly near the nipple and I now have a small divot in my nipple on the top part. So, yeah, I'm a little worried now. :/

  • melissadallas
    melissadallas Member Posts: 929
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    So, have you contacted the facility to get a copy of the actual radiology reports yet? They might give you the information you are seeking. Not the “blah blah” generic letter. The radiology report(s)

  • ctmbsikia
    ctmbsikia Member Posts: 756
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    Melissa she did get the report in her patient portal. It is normal but they did write if concerned to follow up with a breast specialist.

    Kim, hopefully the breast specialist (surely you will find a few within Penn) can get you in for a physical exam to ease your concerns. Good luck.

  • kim575
    kim575 Member Posts: 18
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    Yes, sorry I did get the results. I have no idea what I'm looking at. They said it was negative and to get another mammogram in a year. They then said if I am still feeling a palpable lump that I should consult with a breast specialist, which I did call for an appointment just now. Unfortunately they can't (at Penn) see me until 1/28 so I have to wait a month. The woman I spoke to said she would personally speak to the nurse practitioner and see if she would like to/is able to see me sooner and that she will call me back. I am really hoping I don't have to wait that long. Even if this is nothing, which seems likely given mammo and ultrasound results and my lack of family history, I don't want to take any chances. There are always horror stories.

  • ctmbsikia
    ctmbsikia Member Posts: 756
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    Kim, don't believe you are a horror story. I'm glad you got an appointment, and actually that's not so far away.

  • beesie.is.out-of-office
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    Kim, what does the radiology report actually say? Not the patient letter, but the report itself.

  • kim575
    kim575 Member Posts: 18
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    They actually called back and moved me up to this Wednesday so I'm happy about that!

    Here is the radiology report, Beesie.


    HISTORY: Right outer breast thickening and one episode of clear nipple discharge the patient has difficulty localizing the area of palpable concern in the outer breast.

    TECHNIQUE:

    Bilateral digital diagnostic mammography with tomosynthesis was performed. Computer aided detection(CAD) was applied.

    Focused right breast ultrasound was performed.

    COMPARISON:

    Multiple previous mammograms

    FINDINGS:

    There are scattered areas of fibroglandular density.

    Left:

    No suspicious masses, calcifications or other abnormal findings are seen. Small intramammary lymph nodes are noted.

    Right:

    No suspicious masses, calcifications or other abnormal findings are seen. No mammographic abnormality within the outer right breast in the area of palpable concern. Ultrasound of the upper outer right breast in the area of palpable concern from the 10-11 o'clock location was performed and we do not see any suspicious ultrasound findings. As I discussed with the patient, if there is a persistent area of palpable concern consultation with a breast surgeon should be considered.

    Ultrasound of the right retroareolar region was performed and there are no dilated ductal structures. I personally observed the ultrasound examination.

    IMPRESSION:

    Left breast assessment:

    Benign. No findings suspicious for malignancy. Screening mammogram in one year recommended.

    Right breast assessment:

    Benign. No findings suspicious for malignancy. Screening mammogram in one year recommended. If there is a persistent area of palpable concern in the upper outer right breast, consultation with a breast surgeon should be considered.


    Just FYI, the area where I feel something is between 9 and 12 o'clock but it seems that they looked mostly at 10-11 o'clock. I have no idea if this is standard procedure. I also didn't really have trouble identifying the area, it is more an area of thickening/fullness/feels like something is there than a lump per se. The radiologist also did not try to find the area for herself, she just told the ultrasound tech where to go and then said she didn't see anything. \_(' ')_/

  • LivinLife
    LivinLife Member Posts: 301
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    Soooo glad you got in so much sooner - that's right around the corner. Please let us know how that goes!

  • kim575
    kim575 Member Posts: 18
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    Thanks LivinLife, I will! Thank you ladies for your words of encouragement and help through this trying time!

    :)

  • kim575
    kim575 Member Posts: 18
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    UPDATE

    Saw the breast specialist today. She was not too concerned but is ordering an MRI anyway. She said that if insurance doesn't approve she wants to see me in 3 months for repeat mammogram and ultrasound. So I guess that's good. :)

  • hannah1962
    hannah1962 Member Posts: 9
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    Kim,

    You did great getting in to see the breast specialist so quickly!

    Thank you for letting us know how it went.

    If the MRI is approved, fantastic, but if not, I'm sure having a repeat mammogram and sonogram in 3 months will be good too. The most important is that you have someone careful and who knows what to look for ordering the tests and responding to the results.

    Have a wonderful New Year celebration!

    Hannah

  • kim575
    kim575 Member Posts: 18
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    Thank you so much, Hannah! Happy New Year to you, too!

  • kim575
    kim575 Member Posts: 18
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    I scheduled the MRI which I scheduled for 1/27. I had to wait because it needs to be done 7-11 days after the first day of my period. I absolutely hate waiting like this and am driving myself insane. I know that no one on here can diagnose me but it's the only place where I feel I can vent.

    Anyone else have nipple dimpling with a negative mammo and ultrasound? I'm worried about ILC, specifically because it seems that my symptoms match closely with that kind of breast cancer.

    Thank you for letting me ramble. :)