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Lied too by 2 doctors about BI-RADS!

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lilygizmocat123
lilygizmocat123 Member Posts: 13
edited June 2022 in Not Diagnosed But Worried

Hello!

First mammogram/sonogram last week.Had a very LARGE 9cm lump that needed looked at- Radiologist on staff reviewed images same day. I was told abnormal. Yep thats it! Abnormal. My PCP got the report couple days later and said ABNORMAL! I said thats it?? Thats all anyone can tell me? And I need biopsy. Made 3rd appointment for biopsy and thankfully that doctors office gave me access to my OWN report which says 4C BI-RAD!!! This was on my original report yet 2 doctors wouldn't tell me! Is this normal for them to withhold information like that?? I'm beyond angry!! So nobody was going to mention this 4C until they said CANCER??? I'm a 50 year old woman not a child! Has this happened to anyone else? I shouldn't have to fight to get straight answers! BTW its a large 9cm lump I KNOW its abnormal!!??? I can only imagine what I'm in for if this is cancer! I don't have the patience for these games!

I want to explain a little bit more on this post! After the mammogram AND sonogram a week ago I never received a report, a letter anything! Nothing. All I was verbally told ..was it was "abnormal" I have a 9cm lump! I'm very aware its not normal! Yesterday I made the biopsy appointment the receptionist was asking me questions I couldn't answer!! I said I never received ANY of that information so I can't answer the questions! Somehow she got some information a report that the radiologist had wrote a WEEK ago! Thats the first time I received any information at all!! The letter states that the radiologist explained EVERYTHING in the letter to me a week ago! Lie! I was never ever told anything except one word ABNORMAL. There's alot of info in the report not just the bi-rad! ALL of that info should have been shared with ME!! I honestly can't imagine anyone not wanting to know whats going on in their body!

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  • denise1465
    denise1465 Member Posts: 3
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    I would be mad as well. The only thing I can think of is perhaps the staff doesn't think their patients want to hear the technical jargon, if that makes sense. For me ,and probably you, I want to know every detail, every word, I will look the stuff up! I would let them know what you think about how they have been communicating with you and see if it changes. I hope your mass turns out to be benign!

  • moderators
    moderators Posts: 8,085
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    lilygizmocat123 and denise1465, welcome to Breastcancer.org. It appears you are here for different reasons, but anyway we're glad you've joined us and hope you find it to be a place of support and information.

    lilygizmocat123, as you can read in our main site's articles Mammogram Results: Breast Imaging Reporting and Database System (BI-RADS) and Biopsy, the results after a BIRADS 4 can still come back benign. Please, try not to worry too much and if you can, keep busy the next few days, to keep your mind off the worst case scenario.

    Denisse, good luck with surgery tomorrow! Here's a super helpful thread that you may want to check out before your surgery: Topic: Shopping/packing/to-do list for surgery + recovery....

    Good luck, and please keep us posted!

    The Mods


  • denise1465
    denise1465 Member Posts: 3
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    Thanks, I think it will be the best "sleep" I have had since my diagnosis!

  • gb2115
    gb2115 Member Posts: 553
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    Hi Lilygizmocat123---sorry you have found yourself here. 4C is not a cancer diagnosis, it's exactly what they said---abnormal and needing biopsy because they don't know what it is. I hope it's nothing to be concerned about.

    I know this is easier said than done, but try not to dwell on this too much. Until you have your biopsy and get actual results, you're just going to drive yourself crazy trying to figure everything out, but you can't. Until you know, you don't really know. Trust me...this is coming from someone who worries a lot and has spent a lot of time waiting for results.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
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    denise,

    I agree that your docs should have been more forthright but I don’t think they were lying. I think they simply decided to leave out the medical jargon. Although many doctors no longer do this as they realize patients have become much more savvy, others still do. Wishing you the best

  • lilygizmocat123
    lilygizmocat123 Member Posts: 13
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    I personally consider "omitting" any or all information lieing - but I'm old school! Lol I wouldn't tolerate my son saying I "think" I did my chores? Lol

    The document the receptionist gave me yesterday says the radiologist discussed ALL the info in the letter with me! I was shocked! Believe me when he said abnormal I asked for details I asked to see my scans/images.. I asked for more info and got nothing! Being a mom I KNEW he was lieing but couldn't prove it until yesterday LOL

  • lilygizmocat123
    lilygizmocat123 Member Posts: 13
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    Yes! I am the same! Lol I don't want to be treated like a child! And I like to do my own research! I was a medical assistant and phlebotomist many years ago - my son is currently works in Airforce flight medicine. Good luck to you!


  • lilygizmocat123
    lilygizmocat123 Member Posts: 13
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    Do you know I actually thought the results were worse and I had zero chances of it being benign! So for an entire week I was trying to decide what I would and wouldn't do and essentially getting my affairs in order! That was the result of them hiding all the info from me! So if they were shooting for the opposite it didn't work!

  • gladis
    gladis Member Posts: 43
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    Hang in there lilygizmocat123, BiRad4 wasn't even a known 'thing' when I first heard it in April (2022)

    I've had many mammograms (dense breasts)-maybe even too many?

    and been called back-for another mammo more times than I care to count

    not once hearing the word BIRAD

    -but when I pulled up my medical records online and looked-it was right there (then a 3)

    No one ever said the BIRAD word. (2018)

    The good news (?) the biopsy was a 'wee little cancer' according to the Scottish radiologist.

    Which was successfully excised

    It's-one-agonizing-step at a time

    -head down, chin up and you can do this!

    Wishing you LUCK and sleep!!!

    (wow who knew that sleep was going to be so elusive?)

  • wondering44
    wondering44 Member Posts: 260
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    lily,

    I don't recall a doctor sharing a bi-rads result and I've had a few. The results have been on my reports to read.

    To date: bi-rads 4 (benign), bi-rads 4 (benign), bi-rads 4c (cancer), bi-rads 4 (cancer) (MRI), bi-rads 4a (benign), and bi-rads 4b (benign). I did get callbacks and portal messages that the results were suspicious. The callbacks and portal messages did not include the bi-rads.

    I am sure the frustration you have with the lack of information shared is challenging. The most information from doctors I got about bi-rads was from radiologists during the biopsies at follow-up. A bi-rads 4a, 4b, or 4c does not confirm cancer. It is the biopsy.

    Hope this helps. Keeping you in my thoughts while you wait for results.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,853
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    Thinking back, I actually have no recollection of whether I was told my birads score. Actually, I think that I did not even know what one was at that time as I suspect is the case with many. I understand that many, many women are very intelligent and wish to be well informed and might even be in the medical field themselves but I am still having trouble understanding how this is lying. Omission of medical jargon? Yes, for sure but not a lie IMO.

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    I agree with those who say they were never told the exact Bi-Rads score. And I also don't believe it's lying. Yes, abnormal could mean cancer, but it could also be many other things, like fat necrosis.

    We all understand the shock and fear when the mammogram result comes in. And if it does turn out to be cancer (which we all hope it doesn't) one of the difficult things to navigate is coming to an understanding with medical providers about how much information we want to receive from them. You have a medical background and a desire to know everything. That is probably one of the first things you should make clear. But please understand many patients don't want to know or can't easily process the information. One physician told me many of her patients can't even remember what stage they were two years after diagnosis.

    Physicians often try to give us as much information as they think we need, and leave the door open for the uncertainty that is always there - and there is always uncertainty. If you can try, in this very difficult time, to take a step back and think of it from their perspective it may help you get through. You have enough stress as it is. And we're all wishing the best for you.


  • gb2115
    gb2115 Member Posts: 553
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    I agree, this wasn't a lie. I'm sorry that you didn't feel you got the detail you were hoping for, but it's not typical for them to read radiology reports word for word to the patient. The provider's job in this case would be to relay the information that they found an abnormality and a biopsy was recommended. A lie would be finding cancer and telling you it wasn't cancer.

  • gladis
    gladis Member Posts: 43
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    to add to wrenn and exbrnxgirl- about 'electronic' data and handling technology vs 'lying or omission /lying

    My conversation (h2g) with my family physician yesterday about referrals and requisitions

    Me: I sent the email request last Tuesday

    Him: I don't have email.

    Me: No worries, I have them both-- sent and response ;-D

    Aargh, they haven't come as far as we'd hoped.

  • alicebastable
    alicebastable Member Posts: 1,945
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    I doubt anyone could schedule a biopsy without a doctor ordering it first. It's a medical procedure and that requires a doctor's order to happen. And until it's biopsied, all the information the doctors had was that it was abnormal - that's an actual medical assessment, not just the lay person's definition in common use. I also don't remember if I knew my Birads score at the early diagnostic stage. I know now that it was a 5, but I doubt if I knew it at the time, or if it would have meant anything to me.

  • WC3
    WC3 Member Posts: 658
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    My preliminary report didn't mention the BIRADS score and it was never mentioned by my providers but I already knew it was very probably cancer. I think in my case that it wasn't mentioned because as my OB/gyn said, "Whether it's cancer or not, it has to come out."

  • wondering44
    wondering44 Member Posts: 260
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    gladis - That internet connection from the mainland to you must interfere with timely referrals. :-D Good grief!

  • quietgirl
    quietgirl Member Posts: 165
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    lilygizmocat123

    Do you have online access to your medical records. If it is available thru a patient portal or epic or mychart or any other means I would sign up for it. Some people don’t like using it because you can see information before your doctor actually tells you about it because you often get the information at the same time but for many it’s a great way of staying informed. In the big picture most doctors aren’t going to read you every detail on a test result, (I’m not suggesting that you shouldn’t have received more info just it doesn’t always work that way). I don’t know if knowing the BiRad would have been more informative that saying abnormal both are actually pretty vague but as you said with the size stating something is abnormal is kinda of obvious. Mind reading goes both ways you can’t read their mind and they can’t read yours so I think it’s important for each of us to voice our truth, that means you might have to say to each doctor, I’m a detail person so it’s helpful to me to go over every detail of this test result. Others are more big picture and just want the bare facts and a copy of a report to take with them to look over later.

    In the end as others have said it is unlikely that the doctors goal was to keep something from you but that doesn’t change the fact that it was information that you personally would have liked to know, so I’m sorry that this added to your stress and frustration and hope that you are able to move forward and advocate for your self so you get more detailed information at each stage.

  • lw422
    lw422 Member Posts: 1,403
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    I agree with the others; the doctor(s) were not lying to you. If you were familiar with BIRADs scores and wanted that information, why not just ask? When I was diagnosed I didn't know my BIRADS from a hole in the ground, so if they had told me (which they did not), it wouldn't have meant a thing. The only words I heard were "biopsy" and "malignant" and "cancer." The rest was pretty much a blur until I came to this forum where friendly people helped me through the maze.

    Good luck, and I hope your biopsy is favorable.

  • lilygizmocat123
    lilygizmocat123 Member Posts: 13
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    I know I should be a little more clear- The information I was finally given by a sympathetic receptionist was a paper that I had NEVER been given wrote a WEEK ago!! The letter states that ALL the information contained in the letter was EXPLAINED and given to me. Lie!! Flat out lie! The only information two doctors would say was the mammogram/sonogram were abnormal. That's 100% ALL I was told! I was never told the size, the bi-rad or if they had found anything on the other side! So yes lieing by omission.

  • lilygizmocat123
    lilygizmocat123 Member Posts: 13
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    I pressed the radiologist for 10 minutes and he would only repeat the same abnormal rhetoric! I think if its my body and I ask for all pertinent information including to see the images it shouldn't be a problem! I understand if you dont ask you dont want to know! I was EXTREMELY persistent and was totally blew off and dismissed! I knew I wasn't getting all the info but he wouldn't spit it out! So for a week I was convinced I was at a 5 more likely 6 bi-rad and that was it! If its so terrible and everyone is afraid to elaborate then my only choice was to assume the absolute worst case scenario