Inconsistent biopsy and pathology reports

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jewels9
jewels9 Member Posts: 9
edited November 2015 in Waiting for Test Results

I had a core biopsy on Oct 27th for a mass 29mm by 27mm by 4mm with indistinct margins, stated as complex cystic and solid mass. Came back with a short, simple result of "benign breast tissue with fibrocystic changes."

During all imaging all specialists said they had never in all their over 60 combined years seen a fibrocystic mass appear this way or feel the way it does on palpation. The teaching physician has written multiple books on fibrocystic conditions and masses and was "stumped." She specifically said she'd never use my imaging as even an unusual presentation of fibrocystic in any of her reports or books and implied she was concerned it will come back malignant.

During the actual biopsy the two physicians (the teaching physician I mentioned above, and she helped guide the other physician actually doing the biopsy) "argued" a bit about where to obtain the samples in my mass.

When I got copies of all (mammo, u/s, biopsy and pathology reports ) I noticed an inconsistency- the biopsy report stated they obtained SIX samples, but the pathology report stated they received SEVEN.

I'm alarmed by this whole experience a bit based on the unusual characteristics of my mass (my breast has also increased in size over a cup size now over the past 6 weeks since I found the mass and noticed the increased size- discovered both same day), the baffled doctors, and now the inconsistent reports on number of samples. I've also had no one explain to me what the mass specifically is (i know its benign and fibrocystic but WHAT is it? Its not a cyst, so is it a hard mass of fibrosis, or??) I've now developed odd skin and skin texture changes NOT at the site if biopsy incision.

Four questions:

1. how do I address and with who the # of sample inconsistencies?

2. During a core biopsy do they take different sized samples? The pathologist report said each sample measured different sizes, but only one sized needle was used in my procedure).

3. Has anyone had experiences of labs or the whole process of getting a biopsy going wrong, samples mislabeled, results not accurately read based on the strong need for imaging categorizing and physician impressions to be in concordance?

4. How do I go about getting a second opinion? What exactly should I get the 2nd opinion on, the biopsy results? Imaging? All of it? Do I just call a doctor and say I want a 2nd opinion?

Sorry so long and sorry for all the questions, but my intuition is just "off" with all of this and I'm not sure what to do next to make myself feel assured it's benign.

Thank you kindly in advance, and if this is posted in the wrong area someone please let me know so I can post where it should be to get responses.

Thanks, again.

Comments

  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2015

    Sorry this has happened and raised more questions than it has answered.  I would speak to the docs who did the biopsy and see if they can corroborate the number of samples taken.  For the pathology report, is there description of each sample received in formalin, etc., or just one path result and a statement that they received seven samples?  There should be an accounting on both the collection and reception ends of how many samples there were - either in the reports, or in backing documentation in your record - so ask the question at both ends.  As far as the difference in size of the core samples, this is common.  They are sampling from different areas, so some samples are taken at differing angles, or from different areas of the mass, which is not a uniform size.  You can ask for a second opinion on a core sample from another institution, they will tell you over the phone how to go about that and what they need.  Usually larger teaching hospitals or NCI centers routinely do this type of thing.  I had a friend who had secondary pathology done at another hospital and it is usually just a matter of getting the sample to the facility.  The physician who requested the biopsy can also request that this be done and set up the second pathology/imaging opinion - but if you want both to be considered know that you are asking for a second opinion from a pathologist and a radiologist, so two different areas of specialty..  Also, I believe that often facilities have more than one pathologist look at biopsy samples before generating a report - so frequently reports already have a built in consensus second opinion, but this may not be universal.  Good luck!

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited November 2015

    What did the doctor(s) say when you received your results? Are they satisfied? Typically if the pathology of a biopsy comes back inconsistent with what the doctor expects they will give the option of waiting a few months to see if the mass grows or doing an excisional biopsy (lumpectomy). If you aren't happy with what your doctors have said you can make an appointment with another doctor for a second opinion. If you do go for a second opinion it's standard for that doctor/facility to request the records they need.

    The different sizes of the samples seems normal, at least my biopsies had various sample sizes. I'm not super surprised about the different number of samples noted, either, as that is probably just a typo.

    In my case the first biopsy I had came back benign as well, but the doctor thought the mass looked suspicious enough to recommend an excision. I followed her recommendation and I'm glad I did.

  • dtad
    dtad Member Posts: 2,323
    edited November 2015

    jewels9 IMO you should get a second opinion. This is not the way to start a process. Too many inconsistencies. I would get copies of all your test results and go to another facility. It sounds like you are already at a teaching hospital but I would not feel confident with this set of docs. The new docscan tell you if they need to redo the biopsy. Good luck. Keep us posted....

  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited November 2015

    It's not the different sizes that is worrisome, is the number of specimens prelevated. I had different sizes too on the stereotactic biopsy - you'd think if it's the same needle, it will be the same all over, but it isn't. I agree with the previous posters, you should get a second opinion, and make enough waves to make sure that those samples were not mislabeled.

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited November 2015

    Jewel, I'm so sorry you're having to deal with all of this.

    Have you spoken with "your doc" about your new symptoms? The skin/texture changes + size changes? These are potentially alarming and might call for asap evaluation, even if you weren't already in the midst of a diagnostic process. Note that I don't know enough to really be helpful on that. But you want to add that to your list of "things" to discuss.

    Given the renowned specialist who's been involved in reading your imaging and doing your biopsy, am I safe assuming that you're at a large university or hospital with a breast center? The reason I'm asking is that most institutions like that will have "navigators" to help patients navigate the process. Or ombudsmen to help with problems.

    There is clearly a paper discrepancy. But it is possible that there is no actual discrepancy. That's what you need to find out. For example, it could be that one of the samples managed to be separated into two so that what the pathology lab received as seven might have been "taken" from you as six. (I have no idea, but that's an idea of what might have happened.)

    So. To your questions.

    1. Start with a "navigator." Tell them you saw a discrepancy, and how can that have happened? That person will need to follow up with the various people who write reports/saw your samples.

    2. Even if they use the same core needle, there are at least two things that could cause different sizes that come immediately to mind. How compressed were your breasts? Might they have taken samples in different areas where the compression was slightly different? Did the needle go to different depths in some of the core samples. Again, I don't know the answers--or even the possibilities. But it's certainly possible that there isn't anything wrong. Go in with a curious mind--you want to understand. No accusations...that just makes people defensive. And you want to enlist these people onto your "team" (if they aren't there already).

    3. I haven't had those experiences. But given modern bar-coding/labeling procedures (where they slap a bar-coded label on the sample as it is packaged for the lab), it has become increasingly unlikely that there is a mislabeling error. That's something that the navigator may be able to help with. Where your biopsy was done, what is the procedure? Do they package/label specimens before they're taken away from the patient or the procedure room? Do they compare your bar-coded wrist band with the biopsy labels?All those things are intended to make mechanical errors less likely--although unfortunately, where humans are involved, nothing is impossible.

    4. Do you still trust the "expert"? If so, ask him/her for suggestions on second opinion docs and on what portions of the process second opinions are required. (Given the bafflement among docs, the renowned expert might be as interested as you in having a second pathologist group take a look at your samples.) If you don't trust the "expert" is there another doc you do trust? Talk to that person about accessing another breast center group for second opinions. (BTW, consider checking in with your health insurer. They may well have some procedures you need to use to make sure second opinions are covered by your insurer.)

    5. Finally, ask the navigator who you should ask to review the skin/texture changes. You are trying to avoid full-panic mode (they should appreciate that), but want to make sure that a new and potentially alarming symptom gets included in the diagnostic process.

    HTH (and best wishes--hope you hear that all is in order and nothing to worry about),

    LisaAlissa

  • jewels9
    jewels9 Member Posts: 9
    edited November 2015

    I can't thank you all enough for your time and responses. Your thoughts have all been EXTREMELY helpful. I am waiting for a call back from the nurse navigator like one of you mentioned to discuss my concerns. I was indeed seen at and had all procedures done at a university/teaching hospital breast center, so this navigator will hopefully be a good place to start. I appreciate the advice too about approaching it from a curiosity standpoint and not accusatory- great advice for me as I can come across a bit intense and that's hurt me in the past ;)

    To answer some questions, the pathology report did not state the sample sizes of all seven (or six?) samples but rather stated the range they all fell in. Thanks for clarifying that indeed they do take differing sample sizes.

    I do agree I need to inform them of the skin changes and emphasize the significant increase in breast size which was completely dismissed and not even examined at any of my appointments. I also explained that I can feel what seem like/may be? swollen lymph nodes both in the affected breast as well as above my collarbone and one in my neck a bit above the collarbone area on affected side, and they too were addressed with "hmm, that's odd." I took their lack of concern of these aspects as an invitation and encouragement for me to take the same attitude- nothing to worry about. I even asked if they could please image that stea where I feel them when I was getting prepped for the ultrasound-guided biopsy, but was told no and given some vague explanation that they can't just image all over and are only going to do so on the area of concern. In light of all, I feel it's only prudent to follow up more and also pursue a second opinion.

    As for collecting the samples, I was not provided a bracelet with scanable bar code or anything and know nothing of their process so will be sure to inquire of that as well. I certainly understand that it is highly unlikely that my samples were mixed up or something went wrong, but had it not been for the six vs seven samples issue, it wouldn't have even crossed my mind. I would think that if there was a sample that broke apart or someone miscounted, wouldn't they want to address that in their own reports?

    Again, THANK YOU so much to all of you for your responses and great ideas on next steps. I'm sure all is fine, but when you are dealing with something as serious as this, you can't go wrong with taking every possible measure to ensure just that. Knowing unfortunately like one member shared that initially did have a negative biopsy that was actually cancer, I want to make sure I do my due diligence. THANK YOU ALL, HUGS!

  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited November 2015

    Jewels9, my initial biopsy came back benign, as a fibroadenoma. (I had a vacuum-assisted ultrasound-guided core needle biopsy, she took 5 samples.) The doctor who did the biopsy (my breast surgeon, actually), said that while it most likely was a fibroadenoma she thought one side looked a little odd and suggested I have the lump excised, just in case. I did and there was 2.2cm of IDC in the fibroadenoma. This is not common but it does happen. Luckily my doctor had many years of experience and went with her intuition.

    I would think that experienced doctors would take your concerns more seriously!

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