Trying to make the wait go quicker

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betterdazeahead
betterdazeahead Member Posts: 77
edited December 2018 in Waiting for Test Results

quick back story: 6mts ago I had a mammogram and ultrasound due to an odd red spot on my left breast and itchy, heavy feeling in it. At that time they found nothing and treated me with antibiotics. Because of dense breast tissue and high risk from family history my doc suggested in 6 months running an MRI and going back and forth so I am screened every 6 months.

This past Monday I went in for that MRI she wanted me to have. By Tuesday morning early (according to report sent she didn't even take 10 minutes after hearing about my report and ordering biopsy and calling me herself) I received a call from my doctor saying that she had sent in orders for an ultrasound and biopsy that needed ran immediately - on my left breast, she was very sweet and kept praising that I did what she ordered as many patients don't and this could be much worse had I waited the year for the next mammogram. I felt caught and didn't ask many questions as I totally wasn't expecting any bad news. I went and got my MRI report that same day and have been on pins and needles since - nothing in it sounds good. Thursday AM my appointment was set up and completed. The radiologist said I will hear something by Tuesday.

So a few questions....anyone have a scary MRI that ended up clear on biopsy? any cases of bi-rads 5 being false? and HOW IN THE WORLD have you all kept busy and not thinking about the call/appointment? I must admit this biopsy alone has been rough on me (there are 4 masses) and MAN not only did it hurt to have done especially one of them (an area that has already been uncomfortable) but I continue to have pain 2 days out....normal or no?


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  • Jtjjc5
    Jtjjc5 Member Posts: 21
    edited December 2018

    betterdazeahead, I had a stereotactic biopsy Thursday morning and my emotions are all over the place (had a meltdown last night). I've researched micro calcifications over and over to the point of where it all looks the same and basically it can go either way—although the odds are in my favor. I'm hoping to hear back by Tuesday, as well. As far as passing the time I'm reading, watching mindless television. I managed to shower today, yay! I left the house and had my car detailed—it might be easier if it wasn't so cold and I could hang outside. Because of the biopsy, I haven't gone to the gym, which could definitely help pass the time. If anyone knows when I can go back, I'd like to know. The odds are with us, but it certainly hasn't made me worry any less. I'm still a bit sore as well.

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  • Dani444
    Dani444 Member Posts: 522
    edited December 2018

    Betterdazeahead. I am sorry you are in the waiting game. It sucks, no doubt. I thought my core needle biopsy was rough and had pain for a bit after. My MRI biopsy went better during it but I developed a hematoma after so I had pain for a couple weeks after that. I actually had the MRI biopsy ( my second biopsy for satellite lesions) come back as benign.

    Birads 5 is definitely scary as hell, I too read my report before the biopsy results came in. Distracting myself from the worry was hard. But my house had never been cleaner! I cleaned out my basement twice 😂. Try going to a movie, watch some cheesy hallmark Christmas movies, or gather with friends for a drink if you are up to sharing with them. I wish you the best as you wait.

    PS. As hard as it is try to not over google. It will just scare you and the info might not even be accurate. And ask as many questions as you need on here. I have found this to be an incredibly supportive group

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  • betterdazeahead
    betterdazeahead Member Posts: 77
    edited December 2018

    Thank you Jtjjc5 - I am sorry we are in the same waiting game phase as one another! My doctor told me no exercise for 3 days but I am still so very uncomfortable I can't imaging going on my hike or hitting the gym yet. I certainly hope we both hear good news on Tuesday and not a day later...I will take tomorrow though Please keep me posted - I will be thinking of you and sending all positive thoughts your way!

    Hi Dani444 - goodness I was thinking it was odd that I am still hurting so badly, it is hard to do certain things like bending over still. I had spoke to a few friends who were all like their biopsies were no big deal. Here I have given birth to 2 kids with no epidural (HUGE fear of needles) that was a quick pain compared to this which is just lingering around. LOL google is like my enemy but yet I wanna keep searching and getting to know them....it is doing me no good for sure - I actually promised myself I would step away from it today! Dani did your report also have bi-rads 5 on it? Do you know anyone who had all signs point towards malignancy on MRI and get the all clear after their biopsy?

    I think I am going to attempt a day out and see if I can manage to get any Christmas shopping done. I am so scared more bad news is coming and I won't be able to get what I need to done for the holidays. Also a bit in a frenzy as my Mom her boyfriend and their dog are coming to town this week and staying with us through the holidays.....right now (totally based off IF MRI is accurate) I am in NO frame of mind to want to entertain anyone even as much as I love my Mom.

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  • Dani444
    Dani444 Member Posts: 522
    edited December 2018

    Hi there, I did have a Birads of 5 on my mammo/US, my MRI was done post diagnosis. I will say this about my MRI. When I went back for the second biopsy of the satellite lesions that were seen, one of the areas did not "light up" It was explained to me from the tech that the MRI is very sensitive to even hormone changes in our breasts. I was on my cycle at the time of the first MRI, she said they usually do it at a specific time during your cycle if possible. But since I already had a diagnosis they didn't do that. I hope you hear back soon, and if it comes back as what you are fearing know that you will handle things as they come. Let us know when you hear.

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  • betterdazeahead
    betterdazeahead Member Posts: 77
    edited December 2018

    Thanks Dani444

    My mammo and ultrasound were both clear 6 mts ago. The MRI was ran due to my family history and extremely dense breasts. The tech doing my MRI had me double check where I was in my cycle because he didn't want to risk any false positive results. He said they want to run it between day 5 and 15 - I had guessed the day of my last period but called my daughter to double check my calendar. With the original date I gave him he was refusing to run it, so glad I had my kiddo look at my calandar because I was off by a few days - the actual date put me right at day 12 (what I told him was day 14 but admitted to guessing and he was like lets schedule for next month) so so so relieved I thought to double check.

    Is it common to have multiple biopsies ran?

    I keep telling myself and my husband it is what it is and I would much rather be prepared for the worst while hoping to hear the best. We have a 12 year old son who had a bone marrow transplant when he was 5 and his entire life has been very sick. I feel like I was always searching, preparing myself and that way when we hit rock bottom it somehow seemed easier to handle - trying to apply the same thing now to myself.

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  • betterdazeahead
    betterdazeahead Member Posts: 77
    edited December 2018

    Does anyone happen to know what test is more accurate for bi-rads levels?

    I realized today that our hospital has a patient portal and checked it out today. Where my MRI was a bi-rads 5 when I was sent 2 days later for the ultrasound and biopsy the radiologist put the ultrasound as a bi-rads 4C.

    Does it make a difference that I have extremely dense breast for which test is more accurate?

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  • Dani444
    Dani444 Member Posts: 522
    edited December 2018

    wow, glad you were tracking your cycles! The reason I had a second biopsy was my BS wanted to make sure about the satellite lesions. It was what determined my surgery options. Also I have lobular that is sometimes difficult to find in imaging.

    I am not sure but I think MRI is the more sensitive test. You could search for the user djmammo and message him. He is active on here and is a radiologist. Hopefully you will hear today.

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  • betterdazeahead
    betterdazeahead Member Posts: 77
    edited December 2018

    Thanks Dani444 you are a huge help and I greatly appreciate you responding to me!!! I will look him up.

    My husband and I are taking bets on if my results will show up in the patient portal or if they will call first. I think I may call and check in the afternoon today but hoping they call soon. I am sure not good at waiting around LOL

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited December 2018

    When I go in for these tests I give myself a little pep talk and I continue to give myself a pep talk. " Whatever the results I will deal with it and create a plan. If its all clear I will celebrate by buying myself a nice flower. I have been through hard times before and I can do this!" I have had to learn to be my own cheerleader and to self comfort myself through tough medical issues. Maybe some of those ideas will help you as well.

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  • betterdazeahead
    betterdazeahead Member Posts: 77
    edited December 2018

    Thank you for your response exercise_guru it is greatly appreciated!

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  • Mystic18
    Mystic18 Member Posts: 27
    edited December 2018

    Hi,

    I am also waiting for results since the 29th. Over the weekend, I tried to keep as busy as possible but it's the quiet times that sneak in and make me feel like I'm going to throw up or just start sobbing. This happened last year as well, but they were biopsying calcifications so I knew if they found something, it was likely DCIS and very treatable. It ended up being flat epithelial atypia with ADH.

    This year, it's a mass that was found last November that we've been watching. Since my 6 month follow up in April, it's increased in size and looks more suspicious on MRI so upgraded from BiRads 3 to BiRads 4. My doctor doesn't assign a letter to BiRads 4 categories but did tell me its growth and behavior are concerning and she strongly recommended I NOT wait another follow up period. Please trust me, I feel your pain. It's very hard for me to shut my brain off and focus on other things, especially while at work sitting in front of a computer all day.

    I also have extremely dense girls. :) MRI is our best bet when combined with mam and US for optimal early detection. I am aware of the false positives on MRI, especially during baseline studies because of MRI's sensitivity. I have read that false negatives reduce when previous imaging is available, though, so rest assured with any test you receive that you'll have a full scope of comparisons moving forward.

    I wish you the best of luck. Let me know how you end up - PM me if you want. I feel like all of us need as much strength and support as possible. I know I sure do.

    XOXO

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  • betterdazeahead
    betterdazeahead Member Posts: 77
    edited December 2018

    Unfortunately I got the results today - 3 of my 4 masses were positive, invasive lobular carcinoma. Now I wait to see the surgeon.

    Thank you every one for all the support. Mystic18 I wish you all of the best and hope your wait is nearing the end. The waiting game is the absolute worst part of all of this. Much love and many hugs to you!!!!

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  • Mystic18
    Mystic18 Member Posts: 27
    edited December 2018


    Love and comfort from Pennsylvania...

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  • Dani444
    Dani444 Member Posts: 522
    edited December 2018

    betterdaze- I am so sorry for the news you got. So glad you were diligent in getting the follow up your doctor wanted. I totally get how scary this is , but I will tell you that it does get better when you meet with your surgeon and get a plan in place. Don’t hesitate to use these forums to learn what you can about your diagnosis. There is also great info on the main page. I will echo what Mystic said.... you’ve got this! We are here for you, sending gentle hugs your way



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  • Jtjjc5
    Jtjjc5 Member Posts: 21
    edited December 2018

    Hugs to you; you got this

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