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Not breastfeeding but diagnosed mastitis

trace621
trace621 Member Posts: 40
edited November 2019 in Not Diagnosed But Worried

Experienced intense breast pain on Friday. Warm to touch, flu like symptoms, hard lump near my nipple (right breast). Same breast I have had ultrasounds done for the same lump location for over a year - they always told me, “let’s wait, come back in 6 months and see what happens”.

Went to ER Friday night, gave me antibiotics. pain was still present yesterday and saw a breast specialist. Had ultrasound down and there's no abscess or fluid but a large amount of blood flow to this lump/area. (I'm 38, no breastfeeding/kids). They are treating me for mastitis and gave me more antibiotics.

this morning, the pain was lessened. I did another exam, not as painful (tender/sore but the lump was still there, felt full and lumpy kinda. I noticed when I lay down, that my nipple flattens and inverts itself. No biopsy was done (yet). Should I get a second opinion or call back today for more tests? Thank you! - Tracy

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Comments

  • Dd1978
    Dd1978 Member Posts: 1
    edited September 2019

    Yes! Go to a breast doctor to get evaluated. Better safe than sorry.

  • PinkArmor
    PinkArmor Member Posts: 51
    edited September 2019

    Don't stop till you have the answers that satisfy you the best. Bug the snot out of them!

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I just left the doctor's office again. the antibiotics are making me sick. the lump is still there and when i lay down, my nippled is inverted (the other is not).

    The radiologist said "its just an infection" and I don't believe that. I have had the same lump for a year and this is happening, it shouldnt be so nonchalant by them.

  • Falconer
    Falconer Member Posts: 801
    edited September 2019

    Trace, you know your body. Is there a breast specialist in your area you can see? Mine said that the best detection comes from MRI, which is 1 in 4 times accurate! A mammo, which missed all the cancer in my left breast, is only 1 in 10 times accurate, ultrasound is 1 in 5 Those numbers horrified me. Radiologists can be mistaken, so please seek another opinion. Good luck!

  • djmammo
    djmammo Member Posts: 1,003
    edited September 2019

    trace621

    Can you post the reports from the last 2 ultrasound exams you had?

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I don’t have them. The last 3-4 were done for the same area and each time, they told me, “there’s something there, could be a cyst, let’s wait and see in 6 months” and the last one, the tech suggested I get a 3D mammo because my tissue is extremely dense and it’s hard to see. Couple of years ago, I had a mammo, it was clear, I had a lump in my left breast and it was a fibro tumor and the mammo didn’t pick up.

    The doctor yesterday did say the radiologist did highlight ive been there a few times for the same spot.

    no wound, no cut on my breast. No breastfeeding. No hormones (I have endometriosis) so I’m literally off of any hormonal med for two years

  • djmammo
    djmammo Member Posts: 1,003
    edited September 2019

    Falconer

    "MRI which is 1 in 4 times accurate! A mammo ... is only 1 in 10 times accurate, ultrasound is 1 in 5"

    I'm having trouble understanding these statements as written. Can you elaborate or perhaps direct me to an article that describes this? Thanks

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I just got a call and they wont schedule an MRI now, but I have to wait until after my period.

  • djmammo
    djmammo Member Posts: 1,003
    edited September 2019

    trace621

    There are far fewer false positives on exams done during the correct phase of the cycle, when there is less background tissue enhancement.

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I learned today that I was seen by a general surgeon and not a breast specialist (as the nurse who booked my original appointment told me). Should I make an appointment with a breast specialist or just wait it out?

  • Falconer
    Falconer Member Posts: 801
    edited September 2019

    Hi DJ- what my BS said were those stats; she didn’t give me the research to back it up. Is that erroneous information?

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited September 2019

    When I felt my lump it presented exactly like mastitis. Get the MRI and get to a breast specialist if at all possible. Hope it is nothing serious but it certainly could be serious.

  • djmammo
    djmammo Member Posts: 1,003
    edited September 2019

    Falconer

    "A mammo ... is only 1 in 10 times accurate"

    The way this is written says to me that a mammogram is only accurate 1/10th of the time. So only 1 in 10 mammograms are "accurate" and only 1 out of 5 (20%) of ultrasounds are accurate?

    Is that what you meant to convey?


  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I have new symptoms...my nipple is completely inverted when I lay down or raise my hand. When my arm is down, it is starting to invert/droop a bit. Also my arm (side of the lump), is extremely achy, sore and very heavy feeling.

    has anyone else experienced all this? MRI is not scheduled yet (waiting on my period). No blood work done.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited September 2019

    These are worrisome symptoms and you need to be seen. Maybe go to an emergency room??

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I went to the ER Two Friday's ago. They treated me for mastitis. Been on 2 antibiotics (no change). Ultrasound showed no abscess, no fluid, no cyst but it showed a lot of blood flow to that one area. my skin, armpit, arm is itchy. under my collarbone is achy.


  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited September 2019

    Ideas: You coud go back to ER today and show them it is NOT an infection (not touched by meds, progressing) and let them know you are worried as the symptoms could mean something serious like a breast tumor and you want to see a breast specialist-- obviously it is likely NOT mastitis if worsening while you take 2 antibiotics... have the breast specialist re-examine you (could laso try your OBGyn for a referral)... a breast surgeon might be another idea to try..... or call a teaching hospital or cancer center

    BE A SQUEAKY WHEEL and do not wait! We can support and encourage you but you need to PUSH to be seen by a breast specialist asap. Like, yesterday!


  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited September 2019

    PS I certainly hope it is not cancer but you need to rule it out-- or if it is cancer, you need to get treatment. The inverted nipple is not a feature of mastitis as far as I am aware. Don't panic but be quick as if it was a serious problems, and be pushy to get ANSWERS.

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I totally agree. I am worried that it is cancer because I had a handful of ultrasounds over the last year/two for the same breast, same area and there was always a "something is there, lets wait and see what happens in 6 months" and that has happened 2-3x. And now, its the same spot.

    The doctor I saw was a general surgeon and when I called friday, I said I was worse and all they did was give me more pain meds.

    I have breast cancer history on my dad's side. I had a tumor on my left breast that was removed.

    Would a fibroendenoma cause this?

    I am afraid I cant find a doctor because they are somewhat dismissive of this, "oh its not serious, its just an infection"

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited September 2019

    You cannot take 'no' for an answer. Talk to your ob gyn or primary care doc in the am, and tell them what is happening and see if they can make a call or two to get you in to be seen by someone whose specialty is breasts. Keep pressing till you KNOW you are being taken seriously and treated properly by a knowledgeable person.

    I am forceful, so I would probably say to ER doc, "Look, I have a family history of BC & I have not had children so that's 2 risk factors right there. Further, I have had a suspicious spot there in earlier imaging that I was supposed to watch. Though I am at risk, and experiencing worsening symptoms in this very spot, you will not let me see a breast specialist? Why not? This is not mastitis. The antibiotics are not touching it. I know my own body and something is getting worse rapidly. My nipple was NOT inverted a few weeks ago. I want an exam from a breast specialist and an MRI."

    If I got more "no" I'd take the names of the doctor-- and ask them to put in my chart that I asked for follow up exam by someone who treats BC and breast disease, and they refused. Then I'd raise hell with the hospital administration.

    Do you have a ballbreaker friend who can go with you to ER and help you push? Or a nice OBGyn, physician, or NP who will assist you and get you in to see a breast specialist?

    You can also google or Yelp "breast cancer surgeon" in your town, get the list of names and just start calling them and see who can see you pronto.... "Nobody in the ER is taking me seriously.... in the last few weeks I have developed the following symptoms, XYZ, and it's precisely the same spot my imaging picked up in the past that I am supposed to watch. Can you help me? I am scared."


  • djmammo
    djmammo Member Posts: 1,003
    edited September 2019

    Find accreditied breast imaging centers near you:

    https://www.acraccreditation.org/accredited-facility-search

    Find a breast surgeon near you:

    https://breastcancersurgery.com/breast-cancer-surgeon/

  • Falconer
    Falconer Member Posts: 801
    edited September 2019

    DJ- I was horrified to hear those numbers from my breast surgeon- like I said, she gave me those stats. I’d be happy to know that info is incorrect.

    Trace, don’t give up. I had a palpable lump that was not detected on multiple mammos. The biopsy confirmed IDC and an MRI showed extensiveDCIS.

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    I just got home from seeing my old primary care doc at Urgent Care Clinic. She got me a breast specialist name in my network.

    She found a new lump on my left breast. She is unsure if is a cyst or if its just how my body is (my breasts have a lot of cysts). She did feel the concerning lump...she could feel it more distinctly laying down versus me sitting up. She noticed my lymph nodes under my arm pit on the side of the breast that is giving me problems are swollen but attributes that to my weight gain? (seemed odd) and why my arm hurts (and now my collar bone) is because of the nodes being swollen.

    She said I have to wait until the MRI is done, there is nothing any doctor can do until we do that.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited September 2019

    I guess the last thing you could do is get on MTI ccalendar for when you will be off your period, if you are regular and can predict that date. Good your Primary care doc is helping you!! Keep us posted!!

  • trace621
    trace621 Member Posts: 40
    edited September 2019

    sadly I cant track my period because it changes every month due to my endometriosis! i will keep you posted! thank you for all your help

  • djmammo
    djmammo Member Posts: 1,003
    edited September 2019

    trace621

    Here is an option for those who cannot track their periods:

    https://www.breastcancer.org/research-news/20091120b

  • trace621
    trace621 Member Posts: 40
    edited October 2019

    thank you for the link! it makes more sense now and why they are scheduling it later due to my endo!

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited October 2019

    Maybe ask for the blood test?

  • trace621
    trace621 Member Posts: 40
    edited October 2019

    I asked for everything and they said the next step is only an MRI. Since they are not seeing a red rash or discharge, they are not rushing it. I left a message for a breast specialist and waiting for an appointment/call back.

    Very discouraging and the pain has not gone away but getting worse along with my arm numbing. i will probably need to wait another 2 weeks for the MRI

  • djmammo
    djmammo Member Posts: 1,003
    edited October 2019

    trace621

    I personally have never seen a breast patient develop numbness in the arm merely from enlarged nodes. If the cause of the arm symptoms is not explained by the breast MRI, I would follow up with a neurologist (especially if you are having neck pain as well).