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Why does lumps not show on mammo or ultrasound

annake
annake Member Posts: 31
edited April 2021 in Waiting for Test Results

hi there, I have posted once before, but didn't really get anyone who has been through the same.

I have 2 large lumps. 1 in each breast. it has grown a lot since last year July. it feels like each one it is more than 5cm.

My mammo and ultrasound was last year July. it was smaller then, but it could be felt by myself, gp and radiologist.

I've had a FNA, with atypical results. BiIRAD's 3. There are quite a few notes on my cytology report from the FNA and therefor the breast specialist has booked a MRI for me which is for the 30th of March.

I don't know what to think. Has anyone had large lumps that was malignant that couldn't be seen on mammo and ultrasound?

My areola in my left breast is indented and I can feel a round hard lump under (inside) my areola. it feels like the edge of the large lump which is just above my areola. My skin over the lump in my right breast looks like there is thick stretchmarks. The shape has also changed there. The bottom side of my breast looks flat and not rounded anymore.

The waiting to know what is going on is driving me nuts.

Comments

  • peregrinelady
    peregrinelady Member Posts: 416
    edited March 2021
    I had a 2.5 cm lump that did not show up on mammogram or ultrasound. The MRI should give you more clarity. Hoping for benign causes for you.
  • annake
    annake Member Posts: 31
    edited March 2021

    Hi Peregrinelady

    Thanks for the response. Would you mind telling me a bit more regarding your story?


  • WanderingGypsy
    WanderingGypsy Member Posts: 2
    edited March 2021

    Sorry you’re going through this Peregrinelady. I recently had mammo and US and was given normal results. However, I have extremely dense breast and because of this, the radiologist recommended a baseline MRI. That’s where a few things showed up ( You can read my results posted earlier). And now I have to go back for a diagnostic MRI. None of it was seen on the mammogram and my ultrasound was not thorough (was performed on left breast only and such a small area)

    Do you know your breast density? There’s a great link on this forum with information regarding breast density and the challenge it presents in imaging. I’ve been told that from here on out I’ll have yearly MRI along with mammogram. Wishing you well!

  • annake
    annake Member Posts: 31
    edited March 2021

    Hi WanderingGypsy

    I think your reply was meant for me and not Peregrinelady?

    Did you have big visible lumps?

    I don't know if I have dense breast. I haven't been told this.

  • WanderingGypsy
    WanderingGypsy Member Posts: 2
    edited March 2021

    Hi, yes sorry about that! I’m relatively new to this forum. I’ve had lumps, my largest was when I was 24 (I’m 42 now). It was benign. The MRI I have coming up is for things I can’t feel. But my breasts are SUPER lumpy and it’s hard to determine what’s different. I encourage you to ask about your breast density. I had to ask since nobody bothered to tell me. I think it’s important to know this. Best of luck to you

  • peregrinelady
    peregrinelady Member Posts: 416
    edited March 2021

    Annake, sorry I just noticed your question. If you put my name in the search bar my story is explained in one of my earlier posts. I need to get ready for work now, but please let us know how your MRI goes today.

  • annake
    annake Member Posts: 31
    edited March 2021

    hi all, I went for the MRI today and then they wanted to do an ultrasound after that too. The docs who looked at my scans and did the ultrasound said he can't say it is cancer and he can't say it isn't cancer. he doesn't really understand or know what is going on with my scans. he asked me if I am a diabetic, I am not, but have that a lot in my family. he also asked if I have any other illnesses, which I don't. he said he will compare all the scans again and get a second opinion. he said mine is an interesting case. he will send his report to my specialist and she will decide the way forward,

    I am so confused why these giant lumps don't show clearly what it is on the scans. my specialist will only see me next week.. I don't have an appointment yet


  • peregrinelady
    peregrinelady Member Posts: 416
    edited March 2021
    Wow, that sounds confusing. Very frustrating not to get an answer. I would call the specialist and tell them that you would like to get in as soon as possible.
  • annake
    annake Member Posts: 31
    edited April 2021

    hi, I will phone today. I know she wasn't around the day I had my MRI. with the long weekend as well I don't know if she is maybe away.

    I don't want to feel like a nagger, but I just want to know my appointment date and focus on that. I am naturally a planner in life, so the unknown is just too much.

  • peregrinelady
    peregrinelady Member Posts: 416
    edited April 2021
    Being assertive for yourself does not mean you are nagging. Good luck getting some answers.
  • annake
    annake Member Posts: 31
    edited April 2021

    Email I received:

    I have seen your MRI pictures and the radiologists are concerned that the contrast uptake and washout are both enhanced, ie the blood supply. They are not seeing any masses on masses on ultrasound either, so we could be looking at a precancerous change, but that is unlikely to happen on both sides at once. The other possibility is a lymphocytic mastitis which is autoimmune. I will need to do some blood tests - will send you the form which you can get done at pathcare ( various places) and they also recommend core biopsies which I can do in my rooms. Will ask Nadine to make a time with you next week to do this, then I can also compare if anything has changed in the time intervening.

  • peregrinelady
    peregrinelady Member Posts: 416
    edited April 2021

    Okay, so sounds like it might not be cancer which is good, but you need more testing. Try not to think about it until you get the biopsies. Keep us posted, please

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited April 2021

    It sounds as though the MRI found non-mass enhancement. On an MRI, that is always more difficult to assess than a mass. With a mass, the pattern of enhancement can be pretty clear in identifying the mass as being most likely to be benign or highly likely to be malignant. With non-mass enhancement, there are a dozen possible causes, most being benign but it also could be DCIS and sometimes, ILC or IDC (i.e. an invasive breast cancer). However as the doctor said, with a finding like this in both breasts, it raises the likelihood that there is a benign cause, because benign conditions are more likely than breast cancer to be bilateral. So that's a reason to be optimistic.

    Non-mass enhancement (breast MRI)


  • annake
    annake Member Posts: 31
    edited April 2021

    hi all, thank you for the constant responses. I think it is the lymphocytic mastitis which is caused by type 1 diabetes. she herself has only seen one such case before. I have never been diagnosed, but my dad had it and it is quite big in my family. so I will go Tuesday for the blood tests and Thursday to my specialist which will do the core biopsy this time. last time it was the fna.

  • annake
    annake Member Posts: 31
    edited April 2021

    hi there, I went for my core needle today. should have results on Monday. my blood test for diabetes came back and I am not diabetic. still waiting for the autoimmune test which was sent away out of town. I should get my biopsy result on Monday.


  • saltmarsh
    saltmarsh Member Posts: 192
    edited April 2021

    Good luck @Annake!

    I, too, have been frustrated by how unclear the information from imaging can be for doctors. The denser your breasts, the less clear they can be. My mammograms showed nothing, the MRI showed "something" but it was initially unclear what, the ABUS showed LCIS and ILC, and a second set of eyes on the MRI said they showed more ILC than was initially thought. It's not perfect, but I sure am glad we at least have the tools we have so far!

  • annake
    annake Member Posts: 31
    edited April 2021

    hi all. so I got my core needle results today and it is invasive ductal carcinoma in both breasts. my specialist herself was quite surprised because of it being bilateral and I am 38. I just know it is grade 2. she mentioned that I will prob have chemo before surgery. I had more blood tests done today ( I didn't even look which ones). I have a CT scan tomorrow and an oncologist appointment on Monday. I am still in shock. got the results about 8 hours ago and haven't shed a tear. it all still feels unreal.

    so I just want to find out which stage and take it from there. I am a divoreced single mother with an high functioning autistic 7 year old son. the father is basically not involved at all. so this is who I will be fighting for

  • peregrinelady
    peregrinelady Member Posts: 416
    edited April 2021
    Annake, I am sorry that you are joining us but proud of you for pushing for answers. This is the toughest time while you are waiting to find out about stage, lymph node involvement, etc. Everyone responds to the news differently and you may go through different stages. I started with anger because of my misdiagnosis, then numbness, depression, and finally acceptance. The tears didn’t come right away for me and actually I didn’t spend too much time crying because I knew it wouldn’t help matters. I cried more from the hormonal changes after oopherectomy and that was usually from a Hallmark commercial. 😅 Keep us posted and best wishes.
  • moderators
    moderators Posts: 7,888
    edited April 2021

    Annake, we're sorry to hear such unwelcome news, but we believe that you have come to the right place for support and encouragement. You might check out the IDC (Invasive Ductal Carcinoma) and post your story and ask questions there too. Please, remember we are all here for you, to help you with valuable information and get connected to others who understand what you're going through. Good luck with further tests and please, come back to let us know how you're doing.

    Warmly,

    The Mods