If 80% are benign...

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Mojojennijo
Mojojennijo Member Posts: 173
edited August 2017 in Waiting for Test Results

I have been posting in not diagnosed but worried. I will just briefly give some details before my question.

I have a lump, indent, spontaneous discharge and nipple retraction. Before I had such visible changes I was being monitored for that lump and they saw the exterior changes this last check and sent me for MRI. My ultrasounds weren't super conclusive themselves.

I had a breast MRI a few days ago and my pcp called me himself Friday with the results and told me I had breast cancer. "I wish I had better news your MRI shows that you have breast cancer" "yes your diagnosis is breast cancer" "thank god dr hartling (the radiologist who did my Mamo and us last. I had to go to a specialties place for the MRI so it wasn't the same radiologist) requested you have an MRI" healso said I had three tumors in the left breast. That's the gist of the call.

Anyways I am having a biopsy in the next couple days (this next week they already have me going to many appointments. They got on this super fast) and I was wondering if 80% of biopsies come back benign, do I still fall into that 80%.

I understand that radiologists and MRI can be fairly definitive but what are my odds they are wrong?

I'm really trying really hard to be realistic. Just need a little more info.

As was said on my other post, everything happens on fridays!! Gah!!

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Comments

  • bella76
    bella76 Member Posts: 113
    edited August 2017

    I would say you probably don't fall into that 80% anymore. They did say it was cancer, did they? I also had an indent as well, quite a big one, I googled and searched and tried to find if it could be something else but I couldn't find anything. I understand how you are trying to do the same.

    How long do you have to wait for the results? I had mine 24 hours after the biopsy.

    Waiting is the worst! The worst ☹️

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    it all depends on how they are able to get the biopsy (us or MRI) as to when it will be done. But they did say the turn around isn't very long. I'll know more tomorrow morning as to how the biopsy is being done and when.

    Yeah Bella I had been searching to find info to say it's not it still am . I'm trying not to do that anymore and to just wait. My husband tells me my dr wouldn't have just gone out on a limb with that phone call if they weren't pretty sure. It's like every time it gets quiet and I'm not crazy busy, or am not working.I start to think myself into a corner. It will be better when I have more information from the biopsy etc.

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited August 2017

    Hi Mojojennijo,

    The "80%" number is for all biopsies. However it is possible to carve off "chunks" of that 80%, based on the radiologists assessment of the particular imaging that led to the biopsy. That's where the "BIRADs" ratings come in (a description of the various BIRADs ratings is "here").

    BIRADs ratings have two purposes. The first is to give the referring doc information in a standardized way, which will communicate how likely it is to be a cancer. Insurance companies sometimes (always?) use that rating to determine whether a biopsy will be covered by their policies. And the referring doc who gets the imaging report will make a call as to whether a biopsy is called for, increased surveillance, or just standard screening. This is likely the report your pcp had when he called you. And you want to ask him for a copy of the report.

    The second purpose of the BIRADs rating (as I've read about it) is quality control for radiologists. As they review their ratings vs. the actual results of biopsies over time, they can improve their ability to read breast imaging successfully.

    We're clearly more interested in the first purpose. The BIRADs rating on your imaging reports would allow us to give you a better numerical sense of the likelihood that you have BC. For instance, a BIRADs 4 rating is 2% to 95%. If they break it down to 4a, 4b or 4c, you will have three separate sub-categories inside the "4" category. A BIRADs 5 is 95% or more likely to have BC.

    But even if you're in the "95% likely to have BC" category, there are still women whose images get that rating who don't have cancer. For each of us, it's either all or none. We either have it or we don't. So while it may be likely, more likely than not, or whatever, you won't know for sure until after your biopsy.

    HTH,

    LisaAlissa

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    thank you lisa! Does the MRI have a birads score?

    That's what I thought too. It was confusing to me to have my dr tell me that I actually had breast cancer from the MRI result. I expected if anything a call back saying I needed a biopsy, I didn't expect a diagnosis.

  • Fiddler
    Fiddler Member Posts: 128
    edited August 2017

    Hate to say this, but your doctor is most likely right. When I got called back for mammo and ultrasound, the radiologist came right out at the end of the ultrasound and said it was cancer. These docs can tell which are the "for sure" ones from the images. They are very experienced at this. I said to her, I guess you wouldn't be telling me if you weren't sure, to which she replied, "God, no!" Luckily I had my biopsy the next day but I went through the following week waiting for the biopsy results as being pretty sure it would be positive. The other ladies are right, the waiting is the hardest part. I've had lots of biopsies due to another condition I have so I am experienced at waiting, but it never gets any easier. Good luck! There is so much support for you here on this forum

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited August 2017

    "thank you lisa! Does the MRI have a birads score?"

    Yes, the BIRADs rating system is also used in MRI reports. Here, by the way, is a "cheat sheet" (from a radiology practice) for BIRADs scores as used in mammograms.

    And while Fiddler is right that radiologists with a lot of experience reading breast images get very good at identifying cancer (which is why you can't ignore what they say), they're rarely 100%...which is why it's not "cancer" until the pathologist says it is.

    HTH,

    LisaAlissa

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    I go tomorrow to breast health and will ask them for my report. Thanks again!

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    I went to radiology for us today, not the same place that did the MRI.and they couldn't find the masses. So I need to have an MRI guided biopsy. The radiologist was really mad that my dr told me I had breast cancer and that he should have waited to say that until my pathology was back. They are going to get me in for biopsy in the next day or two.

    I agree with her. Now I feel even more confused.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    Sorry this has been such a confusing process. The radiologist who performs your us was mad as he/she's not seen anything that he/she would consider imaging suggesting that you have bc. The radiologist who read your MRI however, believes that he/she did. It is confusing when different experts disagree, however, they were evaluating completely different types of imaging technologies. Getting the biopsy done and pathology back will be the deciding piece of evidence, so I'm glad that it will be done in the next day or two and you can move forward - in whichever direction the pathology points. Keeping positive thoughts for you and sending gentle ((Hugs))

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    thank you mt! She made me feel a little less disparaged. She said "even with a birads 5 you still don't know until pathology is done but I'd all this a 4, highly suspicious" she said even highly suspicious doesn't mean it's for sure. As you all know, pathology has the final answer. And that my dr shouldn't have told me for sure until they were done with their studies.

    It sounds like there is disagreement with the two radiologists. She did say absolutely do not ignore this and don't let your dr be slow on ordering your biopsy. She was a tough woman and wanted to call and yell at my dr for making me stress. Lol. She also said the 3 spiculated masses on the MRI seem to be linked together so she may only need one sample.

    But yeah they couldn't see ANYTHING at all on the us cause my breasts are so dense, said the MRI showed the masses to be fairly deep and behind my nipple. Hard to see in dense tissue with us. and the lump I've been having watched is a cyst and you cant see much deeper than that so they likely didn't do any biopsy beforecause they couldn't see anything else where the suspicious areas are. So thank goodness for breast changes for signs of a possible problem.

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    mri guided biopsy is the 24th. They said it was a little bit further out than expected because they had to coordinate due to it being MRI.Not sure what to expect but they will email me info. The thing now that has me a little flustered is they are doing everything through my primary care dr (the one who's already called me and said I had breast cancer before my biopsy)So he gets my path results and will call me and if I need further referrals he will do that. Is that how it's normally done? It frustrates me cause he only works a couple days a week. They said my results should be in between 24-48 hours. Of course there's a weekend wait in there as usual lol

    Edit to add that I just called and the surgeon will also be able to access results and advise.

  • Legomaster225
    Legomaster225 Member Posts: 672
    edited August 2017

    My gen recommended surgeons and my pcp actually did the referrals. But, yes that is basically how it starts. You could get ahead of the game if you want to talk to people in your area and start researching a breast surgeon on your own I found us want to be a be ahead of the game . I'm sure your doctor has people he usually refers but it can't hurt to ask others about their experiences

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    lego, I'm in a rural area but the breast center here is said to be a good one. At least that's what everyone says. My bestie went to a different breast center in a city nearby but they aren't contracted with my insurance.

    Aside from the phone call I got Friday, I do like my pcp so as long as he keeps up on things I guess it's ok for him to be the director :)

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    can anyone share what an MRI guided biopsy is like? I was given info about the iv and how I will be placed.justnot exactly what they do as far as how the heck can they get a needle into my breast while im in a tiny tube? lol that's the image in my brain.

    So do they do the MRI then stop and do the biopsy or do they use a different table?

    The breast MRI I had last week was a ramp I paid on with holes cut out for my breasts to go in.

    Again I get the numbing and tiny incision part but not technically how it's done.

    I am always one who likes to know what to expect ahead of time.

    This is why the conversations I've had with drs lately have been so confusing.

    Thanks for any info

  • Leatherette
    Leatherette Member Posts: 448
    edited August 2017

    I (almost) had an MRI guided biopsy. I say that because they did the MRI (of my right breast), and the Dr. said that there was nothing there to biopsy. I did not have anything in my right breast that looked like dcis/cancer.

    The MRI process was just like you described

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    had they previously seen something on the MRI in that breast?

    For me MRI has been the only imaging that has detected something to biopsy. I wish us was the way it was going to be done though! Breast MRI is like laying across a log.

    So they pull you out and do the biopsy? Was curious how they knew where they were going if they weren't watching the procedure through the imaging

  • gb2115
    gb2115 Member Posts: 1,894
    edited August 2017

    I had an MRI biopsy.

    You get the IV for contrast. They MRI scan you first, then pull you out and put your breast into this weird grid compression thingy (very scientific of me, I know :-)

    Then they numb you, make the incision and then somehow mark the place inside, then put you back into the MRI to check the placement. Then they pull you out and do the actual biopsy outside of the MRI machine. I can't remember if they pushed the contrast both times or just once. Hmm.

    Not going to lie, it's kind of a weird experience compared to a core biopsy. But I wouldn't be afraid to do it again. I appreciated that I was face down and couldn't see anything although I did get a little panicky at one point. I remember one of the MRI techs coming over to sort of rub my back to soothe me when the doctor was doing the biopsy. But with the core biopsy, the Ultrasound screen was right in front of my face, so watching the needle go into the tumor on the screen was not something I really needed to see...

  • gb2115
    gb2115 Member Posts: 1,894
    edited August 2017

    Oh, and yeah, it's all on the same table. I think the table breaks away where your breast hangs down, so they can get in there with compression grid. So you're on the same table moving in and out of the MRI, but all the biopsy stuff happens out of the machine.

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    thank you gb! I'm glad to hear I get to get out of there for the biopsy itself. I swear I'm gonna design a more comfortable platform for breast MRI! The tech when I had the first one said "these are onviousl designed by someone who's never had breasts" ;)

    I was very close to pressing the "let me out" button towards the end of the first MRI cause I felt like I couldn't breath laying all my weight on my ribs like that. Also I have a spinal fusion so it was so very uncomfortable. This time I asked my dr to prescribe me something to take before cause they said it takes longer.

  • beachsidesunset
    beachsidesunset Member Posts: 36
    edited August 2017

    Seriously! Also, on your table, design some way that your arms don't go to sleep!! My hands were COMPLETELY numb by the end!! I thought they were floating beside my head by the first fifteen minutes. I literally thought I was going to have to call it quits. I just kept telling myself, "This is too important to quit," "Your hands are still there!!"

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017
  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    so I met with surgeon today. I have no idea what that was all about Monday. They are so convinced that it's breast cancer that he said a benign biopsy would be discordant and he would take it out and check it again if it was. Also said my lymph nodes showed the increased uptake and such. He said it was and always had been a birads 5.

    This dr showed me the MRI and such. It's better for me to have a visual.

  • beach2beach
    beach2beach Member Posts: 996
    edited August 2017

    My 2cents, holding out hope from the beginning was not a bad thing. I did too. Now that it is a bit more definitive, you still have to wait until the pathology comes back to see exactly what you are dealing with, then you can move forward. Until then Saying not to worry I know is not ideal. I will say, try to take deep breathes when you can. I literally worried myself 10lbs off of myself. Had no appetite, drank very little too. Wish I could have taken my own advice. :). Wish I man would have to get mammos of their junk. Maybe that would teach them to take in consideration body parts when they design things. ;)

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    I'm not sure what to say mojo. I'm sorry the other facility gave you false hope and I'm glad that this facility is clear; even though they are giving you such difficult to hear news. It does let you be prepared. This team sounds like they are on top of it and showing you the mri and other info was useful to you. So very sorry that they are so certain you'll get a diagnosis soon. How are you doing?

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    I am regretting signing up to work every single day lol. I can't run away and realize that now. I feel exhausted.

    But I am very grateful to drs who don't play games with my head. I feel more empowered having information. Feeling out of control is what gets in my head and messes with me. I feel like I can put my trust in my pcp again and the other drs I will be seeing. I like this surgeon. I felt like I could trust him.

    I am going on vacation the week after next to spend some time at the ocean and at my in laws (my happy place with my family. I am glad I don't have to wait with anxiety for uncertain biopsy results cause they should be back my first day on the coast. I already know what to expect. I opted to not come back early for my planning appointment and Put it for the 5th.

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    haha @ beach that would for sure work

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    Sending you all kinds of positive energy! Going to your happy place sounds like a most excellent plan.

  • gb2115
    gb2115 Member Posts: 1,894
    edited August 2017

    When is your biopsy?

    You said you asked for meds... I had Ativan on board for my MRIs, it definitely helped! The biopsy one is longer, but not terribly so if I remember...you aren't in the actual MRI for as long I don't think. But it's still a long time to lay there. Once the doctor is done they turn you on your back to stop the bleeding and whatnot. There was also a post biopsy mammogram to check the clip position, so be ready for that. At least you are still numb from lidocaine. Lol, they should numb us for all mammogram...

  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited August 2017

    next Thursday is biopsy. I'm for sure gonna take a sedative this time!

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    keep breathing mojo, you can do this!

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