US BIRADS 0 and disagreement between radiologist and BS

Options
triscuit
triscuit Member Posts: 31
edited October 2017 in Waiting for Test Results

Back in March I had my first breast US due to very dense breasts. I am 48, have had mammograms for many years already due to a problem with nipple discharge about 15 years ago that was diagnosed as ductal papilloma (but never excised). Anyway, mammos were always interpreted as normal and it was not until this year that I was encouraged by my gyn to get an US due to the dense breast issue (not even encouraged, really, I asked about it and she agreed it might be a good idea).

The US in March was labeled BIRADS 3 and I was told I had "busy breasts" and there were several things noted as either complicated cysts or solid masses - 4 areas noted in the right breast and 1 in the left. The radiologist recommended 3 month followup. My gyn said if I would feel better I could be referred to a breast surgeon for consultation right away, so I did that, and it was the same one I had seen previously for a few years about the ductal papillomas. She was unconcerned and said 3 months was not necessary and I could wait 6 and see her again at that time.

I had my followup US and mammo last week (at about 5 months - compromise I guess) and the mammo again was read as normal but dense breasts. The US notes a few things that were "not definitively seen on prior", including duct ectasia in both breasts and in the left breast at least 2 other things:

- 0.8 cm isoechoic oval mass with slightly indistinct margins

- lobular circumscribed complex cystic mass with internal calcification No flow or shadowing and not seen on prior

- oval parallel isoechoic mass with no flow or shadowing but slightly indistinct margins measuring 0.6 cm which was not seen on prior.

Impression by radiologist was new isoechoic and complex cystic masses within left breast. "Rather than perform numerous biopsies, recommend MRI for further evalution". Also mentions the duct ectasia could be further evaluated with MRI. Rated BIRADS 0 - need additional imaging.

The radiologist spoke to me briefly right after the exam (he was SO young looking) and told me about the new findings and recommendation for MRI. I then expected my BS to call me when she received the report (my primary care physician did the next morning) but no call so I called her office twice on Friday and Monday. They had not received the report and when she did she called me back and seemed pissed off at the radiologist. She said that BIRADS 0 was inappropriate for complicated cysts, multiple bilateral, and that you either make a recommendation for intervention (biopsy) or short-term followup. She listed all the reasons why the results sound benign - although at this point she had NOT seen the images, only read the report. I get the feeling she does not like this radiologist and has argued with him in the past.

So I am scheduled to see her tomorrow after we moved up my appointment. I don't know what to think or who to trust on this. The words in the report concern me and while I believe my BS is right that it should not have been left at BIRADS 0 - giving me the impression he didn't know whether to choose 3 or 4, from reading I feel like the "lobulated", "complex cystic mass" part, and NEW findings in 5 months do warrant more than just see you in 6 months.

I have been anxious for the last 5 months and now I'm doubly so, because of the uncertainty. I just want to be able to trust something is benign or not benign and go from there, but I feel like I'm not going to get an answer. My mind is not helped by a strong family history of cancer (not breast, but including 3 sisters with ovarian, uterine and sarcoma cancers - and my sister with sarcoma died 3 years ago with an aggressive cancer that was MISDIAGNOSED at first).

Sorry this is so long, I appreciate any thoughts about how I should approach the discussion with the BS tomorrow. I will be asking to see the images with her and have her explain them to me, but my feeling is she will not want to order MRI or biopsy.

· Share on FacebookShare on Twitter

Comments

  • cive
    cive Member Posts: 709
    edited August 2017

    The birads 0 means they need more information.  I think you may want to have an MRI as is being recommended by your radiologist.  Do check your insurance to make sure it will be covered which may be why your BS is resisting.

    · Share on FacebookShare on Twitter
  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    triscuit, sorry you are here with breast health concerns and conflicting recommendations. Please read this thread by DJMammo to better understand some of the wording in your report: https://community.breastcancer.org/forum/83/topics/858196?page=1#idx_2

    "GOOD (terms): Oval; parallel; circumscribed; anechoic; hyperechoic; isoechoic; posterior enhancement or good through-transmission; avascular; macrocalcifications include pop corn, large rod like, rim, milk-of-calcium.

    BAD (terms): Irregular; non-parallel (can also be written as "taller-than-wide"); not-circumscribed margins includes indistinct, angular, microlobulated, and spiculated; hypoechoic; posterior shadowing; architectural distortion; internal vascularity; microcalcifications including amorphous, coarse heterogeneous, branching, fine pleomorphic."

    In your report (the part that you posted), I only see "slightly indistinct" from the "bad" terms that DJMammo lists (although the "internal calcifications" were not described further).

    I agree with cive, BIRADS 0 merely means "needs more imaging" to make a determination and the recommendation for mri correlates both with the BIRADS 0 and your breast density. So IMO the radiologist made the right call if he/she feels that more imaging is required to be certain. As long as my insurance would cover the mri, I'd be getting that. Then, I'd go see the surgeon with my mri results.

    · Share on FacebookShare on Twitter
  • Lula73
    Lula73 Member Posts: 1,824
    edited August 2017

    definitely do the MRI-it will often show things better than mammogram and/or ultrasound. It's non-invasive and only requires enough downtime to do the scan. Surgery should come after provided something was found on MRI, biopsies and found to be cancer or suspicious

    · Share on FacebookShare on Twitter
  • triscuit
    triscuit Member Posts: 31
    edited August 2017

    Thanks for your replies. I will be seeing the breast specialist this morning so we'll see what she says. Hopefully she will agree to order the MRI as I think that's the best chance of getting it covered by insurance. If not, I may consider a second opinion somewhere else.

    · Share on FacebookShare on Twitter
  • triscuit
    triscuit Member Posts: 31
    edited August 2017

    So, the meeting with the breast specialist was interesting. She really felt that MRI would not add clarity to the situation, and said nothing on the US alarmed her at all. I pressed her on the wording in the report, especially the lobular circumscribed complex cystic mass with internal calcification that was noted as new from 5 months ago. She said it would make sense if the radiologist had recommended to biopsy that, but not do more imaging, because the imaging probably wouldn't make it less ambiguous. She seemed surprised when I agreed to that approach, but I am all for trying to get answers and not waiting another 6 months worrying about whether it really is benign (which it most likely is, but what if not?).

    Biopsy now scheduled in 2 weeks.

    · Share on FacebookShare on Twitter
  • windingshores
    windingshores Member Posts: 704
    edited August 2017

    Good, I was going to suggest finding a doctor who would biopsy and glad the one you already have, will do it. Your next 6 months would be unpleasant to say the least without the biopsy step.

    · Share on FacebookShare on Twitter
  • triscuit
    triscuit Member Posts: 31
    edited October 2017

    I have an update on how things have progressed (or not) and some questions.

    I had an ultrasound guided core needle biopsy on Sep 13 of the 3 sites in the left breast identified as new findings on Aug 23 compared to Mar 15. The results indicated intraductal papilloma with sclerosis at 3:00 and 6:00 and at 11:00 there was "fibrocystic changes with dense fibrous stroma and focal intraductal papilloma". In all 3 sites focal microcalcifications were also noted.

    Then a day later from getting this report I found out I tested positive for a CHEK2 mutation.

    I met with the breast surgeon again this past Monday, and she said everything was benign and overall wasn't too inclined to surgically excise, although the CHEK2 result puts it on the table as more of an option. I had done a lot of reading that indicated that multiple papillomas are more of a risk and should be excised. She didn't seem concerned about that and worries that I would potentially have a bad cosmetic outcome for completely benign findings. We discussed and decided to go ahead with an MRI first and then decide on a course of action.

    I had the MRI on Friday and just got the report - or at least page 1 of the report - late this afternoon. I don't have a followup appt for a week so I'm trying to figure things out, but I'm not familiar the the MRI terminology.

    The report says the right breast is normal. They were able to identify the 3 sites of the core biopsies by the biopsy clips. However, they found 3 additional areas of abnormal enhancement that were not at the biopsy sites.

    1 - a focal area of abnormal enhancement measuring 7x5x6 mm demonstrating 238% peak enhancement and 16% washout.

    2- a focal area of abnormal enhancement 5.3 cm posterior to the nipple measuring 1.0 x 1.0 x .7 cm. This demonstrates 228% peak enhancement and 5% washout

    3- a well-defined focus of abnormal enhancement measuring 6 x 5 x 6 mm, demonstrating 260% peak enhancement and 15% washout.

    It is noted that these probably represent papillomas as they have similar appearing enhancement characteristics as the residual tissue adjacent to the biopsy clips from known papillomas. These additional areas were not visualized on the ultrasound on 8/23.

    So, what does it mean? 3 new papillomas that weren't visible on the ultrasound but are visible by MRI? The report cuts off and appears there is supposed to be a page 2 (says 1 of 2), and there is no BIRADs rating or impression given. Is the % enhancement and washout consistent with benign?

    I feel frustrated to keep getting more findings at each level, but then told it all looks benign, but maybe we should do more, but don't worry...

    Incidentally, I tried to get into a clinical study I saw listed that was studying surgical excision of papillomas and other benign findings to see the rate of upgrade in diagnostic findings to DCIS/IDC which was being done at Dana Farber. The study PI wrote me back quickly saying they were no longer recruiting for that arm of the study but she said "At our institution we have been recommending excision for situations like yours since the intraductal papilloma arm accrual has been completed. If you are able to come to Boston I or one of my colleagues will be happy to see you." So, that's interesting and a possible second opinion for me to pursue.

    Any help on interpreting the MRI much appreciated, thanks :)


    · Share on FacebookShare on Twitter
  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    It looks like the page that you got has the clinical description, that is intended for other clinicians (most of us, except DJMammo, are not really experienced in interpreting those descriptions). The parts that you'd want to focus on are the impression, the recommendation and the BIRADS score (most likely on page 2). Can you call them and get that page?

    · Share on FacebookShare on Twitter
  • triscuit
    triscuit Member Posts: 31
    edited October 2017

    Thanks MTwoman, the nurse did call me to tell me the results and read me the end of the report that got cut off. They are calling it BIRADS 3 and recommending short term followup. I meet with the breast surgeon again next week to go over it. I'm still uncomfortable with the number of papillomas and that they keep showing up (not all seen on first ultrasound, these 3 new things on MRI that weren't on the second ultrasound).


    · Share on FacebookShare on Twitter

Categories