Is waiting foolish? And is there a "normal"?

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emilynn
emilynn Member Posts: 28
edited November 2019 in Benign Breast Conditions

I am 38, and per the recommendation of my mother's breast cancer doctor I went ahead and had an early mammogram. She said that it would create a baseline for future mammograms to be compared to. It was not quite that simple. Since April, I have had two mammograms (one 2D and one 3D), an ultrasound, stereotactic biopsy, breast seed localization, and excisional biopsy all to remove a radial scar.

I thought all was clear after that, but due to having a radial scar (which was benign) and having a mother who had breast cancer I am now considered high risk. They said that with the algorithms they run I am in the category to be screened every six months. In my head I thought that was fine, I would start going every six months for that one test and all would be well in between.

I went in for an MRI on the 21st and they already sent me for an ultrasound this Monday (the 28th). The radiologist is recommending two biopsies because I have three masses that showed up on the MRI. The third mass would be a complicated procedure because of the depth and proximity to the chest wall muscles so they would leave it. He said they would test the others and if they are fine assume that the third is also fine.

My question is, since they believe the masses to be fibroadenomas that look benign, is there harm in just waiting for my next mammogram in April of 2020 or just ignoring them? My biopsy and the breast seed localization were traumatizing and I am really tired of being poked and prodded. I feel like a baby because I see people going through so many procedures and being so brave and stoic about it, but after that last procedure I can't even fathom being awake for another procedure.

All that to say, I am wondering if waiting is crazy.

And I am also wondering if it is normal to have so many extra tests and procedures? As in, I am 38... should I be expecting to have follow ups for every single mammogram or MRI appointment from here until......??? I think I just had in my head that women go for their one mammogram and for the majority that is it until the next year.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited October 2019

    I would not wait. Fibroadenomas and radial scars can mimic cancer. Imaging can only tell you so much. Without testing any suspicious looking tissue, there is simply no other way to know 100% if you are fine.

    There are some sub types of breast cancer that are aggressive and grow more quickly. Obviously there is already a change going on from removing the radial scar to this most recent MRI. Otherwise, they wouldn't advise another biopsy.

    Good luck to you, if it was me, I would want to know 100% no matter my age or how many tests and biopsy's are required to do so.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited October 2019

    Hi there. My two cents would be to grit your teeth and have all of the tests recommended now. But to answer your question: no, once you have this finished up, assuming everything is benign, you should be back to simple ultrasounds every six months with no "poking and prodding" unless something really new pops up. Do ask for copies of all of these reports tho! If you move or switch doctors it will save you some unnecessary testing. Best of luck to you.

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  • emilynn
    emilynn Member Posts: 28
    edited October 2019

    Thanks for the input! I did finally get the ultrasound report. I don't have any information from the MRI, but since the ultrasound was a follow up to that maybe it has all the information I need anyway. The ultrasound says both "4A-Biopsy : Suspicious." and "Low suspicion for malignancy. Biopsy should be performed In the absence of clinical contraindication." Which is confusing to me. Thankfully we go to talk to the doctor on the 13th so I don't have too long to wait to hash out all my questions.

    I guess my big fear is that if I do the biopsy and need another surgery, after that is done it is not really done. I worry that in May when I go for the next follow-up new fibroadenomas pop up and we go through the same thing every six months.



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  • MamaAvery
    MamaAvery Member Posts: 47
    edited October 2019

    I would want them looked at after hearing about how the phyllodes can mimic the FA. The breast surgeon said biopsy is only around 65% accurate for diagnosis though and that’s part of why my suspected FA is eligible for removal, since it’s not quite big enough. I *need* to know though, personally. After that, I think I could feel comfortable if more FAs showed up after knowing that’s what I already had.

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  • emilynn
    emilynn Member Posts: 28
    edited October 2019

    MamaAvery, How did your FA show up? Did you see it first in a mammogram?

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  • MamaAvery
    MamaAvery Member Posts: 47
    edited October 2019

    I have had it for several years. I have super small breasts so it has always been easily felt. It’s been visible the last year or so since I stopped nursing.

    It started bothering me a lot more this last few months so I went in to my Gyno to ask for a referral for removal. Then my “it’s fine bc if size, shape, mobility” lump turned into a “why were we so sure this was benign?” Lump and I was sent for testing.

    I *think* it grew, but I don’t know. The 2 radiologists I’ve seen for imaging and the biopsy both said that growth is normal over 6 years and they think it’s probably just fine. It did look like a classic FA on ultrasound and the biopsy results were concordant with both of the radiologists scan based diagnosis. Now to just hope the last results agree!

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  • emilynn
    emilynn Member Posts: 28
    edited October 2019

    MamaAvery I hope everything goes well for you. My suspected FA only showed up on the MRI. I know MRI is sensitive, but I guess I was just surprised that they didn't show up at all on the mammogram.

    I see my doctor for my follow up on the 13th, so until then I am going to try to relax about everything...but also come up with a list of questions for her.

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  • emilynn
    emilynn Member Posts: 28
    edited November 2019

    So...to update:

    I had my appointment with my breast surgeon yesterday. I asked my list of questions, told her about my painful experience with the doctor that did the mammogram guided seed localization procedure that was done before my excisional biopsy, and she said that she will hand pick someone else to do my procedure who will be patient and ensure that I am comfortable and numb before proceeding. So I am feeling better about having other biopsies now.

    I did ask for copies of all my records so I was able to read through all the medical terminology which was really helpful.

    My doctor also said that she does feel like once she knows what these are (and assuming all is clear), that I should be able to have six month screenings without having to have follow ups and biopsies every six months which was my big fear.

    So for now it does look like I am waiting for more biopsies and those results...but I am a lot more at peace about the whole thing. Thanks ladies for your help!

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  • MamaAvery
    MamaAvery Member Posts: 47
    edited November 2019

    So glad you’ve found some peace! I hope the new biopsies go better for you.

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited November 2019

    Go. If not for yourself, do it for others that are battling this disease. You don’t want to be in this number. If it’s caught early, you’re better off. The old saying, “better to be safe than sorry” is around for a legitimate reason. Please go.

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  • emilynn
    emilynn Member Posts: 28
    edited November 2019

    I did decide to go, so it looks like December is when the doctor is back on the schedule that my breast surgeon has picked for me. She has assured me that this other doctor is great with his patients and will ensure that I am okay and numb before doing anything. That makes me feel better. I was afraid of each time being like being stabbed in the chest and having to sit still for it.

    My doctor also explained that two times in her career (she is probably about 45 years old) she has seen what looks perfectly benign, like a fibroadenoma, turn out to be a nasty cancer...and that is why on every solid mass she requests biopsies. I think part of what was so confusing to my husband and myself is that the radiologist didn't take time to explain anything and said that they look benign, so we didn't understand why biopsies would be needed.


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  • MamaAvery
    MamaAvery Member Posts: 47
    edited November 2019

    I wish they all explained things well! Even after biopsy, some will still want to do further surgery.

    That was a part of why I had my excisional biopsy today. Phyllodes tumors can rarely be mistaken for a Fibroadenomas. Biopsy to distinguish is only accurate around 65% of the time, according to my breast surgeon.

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