Waiting for biopsy results and terrified.

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JLVFORD
JLVFORD Member Posts: 4
edited October 2018 in Waiting for Test Results

Hi everyone. I'm brand new to this forum as a result of a pretty rapid series of events. My name is Jamie, I'm 29, and I'm getting married in a month on November 3rd! Over the summer, I had my annual appointment with my OB/GYN. While performing a breast exam, my doctor asked if I had any family history of breast cancer. I do - my paternal grandmother and two paternal aunts all had breast cancer in their 40s. He recommended that I undergo genetic testing, which I did, and learned that I have an NBN gene mutation. My understanding is that the NBN mutation is relatively rare and newly discovered, and that it increases my risk for breast cancer but not to the same degree as some other mutations.

Because of the positive result, I was referred to a geneticist and a genetic oncologist, who both recommended that I start screening around age 35. However, the genetic oncologist recommended that we get an initial MRI scan to establish a baseline and I scheduled it for about two weeks ago. Shortly after, I got the result that an architectural distortion showed up on my MRI, but my doctor did not feel it was anything to worry about. Nonetheless, she recommended I mammogram and ultrasound, and I had both of the tests last Thursday. Immediately after the scans, the radiologist came in to the room and informed me that she saw the architectural distortion on my mammogram, but couldn't find anything on the ultrasound. However, in a pretty callous manner, she basically assured me that this is a cancerous lesion and gave me essentially no hope that it is anything else. I left the appointment in a state of total shock and disbelief.

Today I had a stereotactic vacuum assisted core biopsy. Unfortunately, it was a pretty atrocious experience for me. The injection of the numbing solution didn't hurt, but I immediately started bleeding. The biopsy itself was extremely painful to the point where I turned white, starting profusely sweating, and actually vomited. After it was all over, I had to go back about 6 hours later because I was bleeding through my bras and they had to redo the closure strips. Now I just have an extremely bruised and sore boob.


I am so incredibly terrified that I'm about to be diagnosed with cancer at 29. To make matters worse, I'm trying to be excited for my upcoming wedding and honeymoon and finalize all the details. It's so hard to focus on anything while waiting as I'm sure many of you know. I guess I'm here for the support and understanding of others who have been through this really difficult time.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited October 2018

    Oh goodness, that sounds just awful! Please know that the odds of breast cancer at your age are low, and an architectural distortion could well be a benign finding. So while you're waiting for results, do try to focus on the fun and the wedding planning! We will be here if and when you need us, and treatment options are very good these days.

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  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited October 2018

    I've had three biopsies and one was rough like yours. Ice helped me. Sorry you are having to go through this.

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  • princesspeach
    princesspeach Member Posts: 6
    edited October 2018

    I'm so sorry, that sounds like an awful experience. Sending hugs.

    I'm not in exactly the same boat, but I get the fear. I'm 31 and went to the doctor for a persistent skin issue on my nipple, and now I'm waiting on results of a biopsy. It's so scary.

    Good luck with everything, keeping you in my thoughts!


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  • mandih
    mandih Member Posts: 18
    edited October 2018

    I'm so sorry for your experience. Just the fact that one has to be done is emotional and traumatic. I had a biopsy today as well and won't get my results until October 15.

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  • Dani444
    Dani444 Member Posts: 522
    edited October 2018

    Waiting is the worse, and I hope for you to have moments of peace while you wait. I imagine it was very scary to be told that by the radiologist, and in such a harsh manner. I am sorry you are going through this! I can sympathize with the biopsy pain, my core needle was very painful, and the MRI vacuum assisted biopsy was not painful during the procedure, but after. I second the suggestion for ice packs! Just a thought but maybe you could call your OB and ask her to help explain the dictated findings from the radiologist, she should have that report. Did they say if the breast center would be the ones to call with the path report? Maybe if you convey to your OB how anxious you are she will be diligent in looking for the path report so she can let you know right away. Good thoughts for benign results. I have found everyone on here to be amazing support. Do not hesitate to ask questions, or just vent anything that is on your mind when you need to.

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  • LisaB555808
    LisaB555808 Member Posts: 2
    edited October 2018

    Hi all. I, too, am new to this forum. I am 57 years old- and in an attempt to cross things “off the list” I went for a mammogram. Then an immediate ultra sound. Damn. So Quick!!! The radiologist came into the room and told me..it doesn’t look good...I don’t like what I’m seeing. To which I replied “what do you know that I don’t?” (The woman doing my ultrasound said that the mass was 2 cm. And nothing found in my lymph nodes????). She simply said she wants a biopsy on both breasts. My left breast has a calcification cluster -right breast has a 2cm mass. THat was 6 days ago. Tomorrow is my biopsy on both breasts. Scared to death of the needles and more of the results. I have cried enough in the past six days! Think I’m ready for the worst. time will tell. I will think about all of you. Wishing the best ladies.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited October 2018

    Lisa, wishing you the best as well. My biopsies weren't that bad, but yep, there are needles involved. Have some ice and Tylenol on hand for when you get home, and do let us know if we can help.

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  • WC3
    WC3 Member Posts: 1,540
    edited October 2018

    Sorry you had such a bad experience with the biopsy. Sometimes radiologists are wrong, and I hope yours was, but if not, hopefully something positive will come of the vigilance of your OB/gyn and the genetic oncologist who recommended the baseline MRI.



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  • LisaB555808
    LisaB555808 Member Posts: 2
    edited October 2018

    Thank you WC3!!!! Means a lot to me. Even though we haven’t yet had another word between us! ❤️❤️

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  • JLVFORD
    JLVFORD Member Posts: 4
    edited October 2018

    Thank you everyone for your kind words and support. Unfortunately, my biopsy results came back inconclusive so I have to go through another biopsy on Monday. Apparently the clip that they inserted into the biopsy spot was not in the exact right spot, so the doctors aren't sure that they got the correct tissue. I'm dreading having to go through another biopsy and go through the waiting for the results. I wish I could get some answers.

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  • sparrowhawk
    sparrowhawk Member Posts: 179
    edited October 2018

    ugh! I am so sorry to hear that. Thinking of you! I really hope you receive some positive news soon.

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  • Dovely
    Dovely Member Posts: 91
    edited October 2018

    I'm waiting on a similar thing. I'm 42, and during a outine annual my obgyn found a lump and dense area and urged me to go get a mammogram, as I haven't yet. I went in and the radiologist said I had “architectural distortion" possibly a radial scar- or cancer. I have very dense “noisy breasts" with benign cysts and growths throughout. He couldn't really find much detail of the area on the ultra sound either, so he decided to biopsy it. Pinned the spot then had me do a mammo photo again to make sure it corresponded with the distortion he saw. It's all so vague!!!

    The waiting is excruciating. I was supposed to hear back today but looks like I have to wait until Monday.

    My friend gave me a great perspective. To view all of this as a GOOD thing, that due to technology and research we are able to catch these things and get rid of it.

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  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited October 2018

    Dovely I had very dense breasts and they did an MRI. Have they suggested an MRI?

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  • Dovely
    Dovely Member Posts: 91
    edited October 2018

    rachelcarter35, they said the next step I think? I think he wants to see what the pathology says. Also the mammogram was 3-D

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  • Dani444
    Dani444 Member Posts: 522
    edited October 2018

    JLVFord- I am so sorry you did not get the answers, but I am glad they are being diligent. I hope you get good news from the follow up biopsy. Keep us posted.

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  • PurpleCat
    PurpleCat Member Posts: 358
    edited October 2018

    I'm so sorry you have to go through this again and are in this horrible waiting game at such a special time. I'll be thinking of you on Monday!

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  • healthystrong
    healthystrong Member Posts: 14
    edited October 2018

    Hello!  I am sure that you are terrified and I do know how hard it is to wait.  Please hang  in there. I remember the terror I felt after getting my biopsy results & waiting for the second surgery to see if lymph node involvement.   I called my primary care and said my fear and stress was an eleven out of ten. He prescribed me something for anxiety which I never took.  I am runner and during this time running was the only thing that made me feel human. I also threw myself into my work and the time did pass --no lymph involvement.  This was 6 years ago, almost to the day.  I had radiation and am now on aromatase inhibitor.

    I am so surprised that the doctor would make a pronouncement that the lesion is cancerous before getting the biopsy results. If it is any help at all my surgeon (who I love and respect) made the pronouncement from the initial surgery that is was benign.  Which it wasn't.  So take a deep breath and get through to the biopsy results. I know it is easy for me to say.

    Please tell your self that you are being proactive and in all likelihood if there is anything it will be early.   

    Prayers for you!!  

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  • healthystrong
    healthystrong Member Posts: 14
    edited October 2018

    Hello!  I am sure that you are terrified and I do know how hard it is to wait.  Please hang  in there. I remember the terror I felt after getting my biopsy results & waiting for the second surgery to see if lymph node involvement.   I called my primary care and said my fear and stress was an eleven out of ten. He prescribed me something for anxiety which I never took.  I am runner and during this time running was the only thing that made me feel human. I also threw myself into my work and the time did pass --no lymph involvement.  This was 6 years ago, almost to the day.  I had radiation and am now on aromatase inhibitor.

    I am so surprised that the doctor would make a pronouncement that the lesion is cancerous before getting the biopsy results. If it is any help at all my surgeon (who I love and respect) made the pronouncement from the initial surgery that is was benign.  Which it wasn't.  So take a deep breath and get through to the biopsy results. I know it is easy for me to say.

    Please tell your self that you are being proactive and in all likelihood if there is anything it will be early.  

    Prayers for you!!  

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  • stotlj00
    stotlj00 Member Posts: 5
    edited October 2018

    Jamie, I had a biopsy in 2010 & felt everything. It was horrible! I had another one a few months ago & told them about my first biopsy experience so they gave me polocaine instead of lidocaine. I didn’t feel a thing! I would ask if they can try something else. No one should have to go through that. Sending good vibes your way

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  • lynnrachel220
    lynnrachel220 Member Posts: 6
    edited October 2018

    I'm almost in the same boat as you.. I'm 20 and found a lump in my breast. I just got a biopsy today and am waiting for my results. I wish the best of luck to you and, regardless of what the results may or may not say, everything will be okay. ❤

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  • JLVFORD
    JLVFORD Member Posts: 4
    edited October 2018

    Hi everyone,

    First, thank you all so much for your kind words and support. It has been a really trying month for me. The good news is that the second biopsy was significantly less painful than the first. The radiologist made sure that I was completely numb and added numbing medication throughout the procedure. I didn't feel much, which made the process easier. I received the biopsy results and there is good news and bad news. The good news is that the word BENIGN is written on my report and I cried when I heard that word. The bad news is that my doctors still want to surgically remove the area. The report came back as "benign breast tissue with extensive proliferative fibrocystic changes," which was explained to me as rapidly multiplying cells. I'm getting married in two weeks and will be honeymooning in Chile for two weeks after the wedding, but I have consults set up with breast surgeons after I return.

    Has anyone had a similar diagnosis to this? What type of surgery, if any, did you choose?

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  • PurpleCat
    PurpleCat Member Posts: 358
    edited October 2018

    I am so happy to hear this! Benign is great news!

    I haven't had exactly what you've experienced, but have had several fibroadenomas. One was removed, the other two I left alone and one of them disappeared after a while; either that or they took so much of it during the needle biopsy that there was nothing left to feel. You might get more and better responses to your question in the "benign breast conditions" forum.

    I might not be exactly most reassuring person to respond, since I did also get a cancer diagnosis last month, but in the pathology report they mentioned fibrocystic tissue too, which tells me that they ARE able to tell the difference.

    Enjoy your wedding and the honeymoon with this stressful time behind you!

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