Mixed signals

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Mal1416
Mal1416 Member Posts: 4
edited May 2018 in Not Diagnosed But Worried

Sorry if this is long, I'm not sure which Dr I should listen to.

I noticed an indention on my left breast 2 years ago, I had just weaned my youngest son so they couldn't see anything on an ultrasound. They suggested I come back 6 months later but life happened... 4 kids with 3 being under 3 at the time and moving. Last fall I noticed a dull ache that never seemed to go away, mostly around the side of my breast, underarm, and back in my shoulder blade. I tracked my cycles and it never changed but I couldn't feel a lump other than the many I've had as long as i can remember. One Dr described my breast as gravely in my late teens/early 20s. I scheduled with the NP at my gyn office in December and she found a suspicious lump under the indention that was still there and had gotten longer, my lymph nodes were also swollen on that side. Diagnostic mammo and ultrasound found 2 lumps/cysts that were scheduled for aspiration and biopsy, if needed. First one drained immedietly and had clear fluid. The second one the Dr asked the nurse to open the biopsy needle because he couldn't get into it after several minutes. Just before she handed it to him he was able to get in and it drained pink fluid. He told me I was all set come back in 5 years when I was 40 to start routine mammograms, he must have reminded me I was almost 35 every 5 mins during his exams. I left relieved and shared the great news with a friend that was diagnosed stage 2 a few years ago. She told me hers had done the same thing and the pink fluid is suspicious so wait until patho comes back. They didn't send off the fluid or do a biopsy so she told me to call the NP back. I waited a few weeks to see if the lump came back like hers, but I've still never felt it. The ache has never gone away after 3 months and now the indention is pulling in my nipple so I scheduled another appointment. The NP thought I had a biopsy and that is why I had called with discomfort a few weeks after the aspiration. She felt the lump was still there/back and left the room to speak to the other drs. My lymph nodes are still swollen and I have lost more weight in the 3 months so she told me she wanted to send me to the breast center asap. They were booked so i was sent to a general surgeon for a biopsy. He once again reminded me I'm 35 and have a lot of lumps. He didn't see the indention and was just about to send me on my way when a nurse pointed it out. I now have to do another mammo and US on Tuesday. I feel like I'm being passed around and getting mixed signals. The gyn keeps saying suspicious and asking about support systems. She keeps rushing test and says it is definitely not a cyst. The other Drs say I'm too young and they don't see anything or nothing needs done. The radiologist report says the cyst drained with pink fluid in the description portion, but in diagnosis says fluid is clear no need for further evaluation. I really believe if he hadn't opened the biopsy needle, if he hadn't had that moment when he had doubt, I wouldn't have doubt and would accept my indention as nothing. I really feel like im wasting their time and am too young like they keep telling me, but everything I've read says that the pink fluid should have led to a biopsy. The NP said it should have been biopsied esp since she had ordered one.

Comments

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited May 2018

    Mal, I am so sorry to hear what you are going through. The emotional stress I am sure nuts. I have only had one aspiration and it was probebly 11 years ago...so I really don't know much on that side of things. I am SURE those that are will drop in soon.

    What I did want to speak about is your age. I was 36 at my first dx...3 months after my birthday. I am so thankful my OB jumped on nothing but "random pain" and discharge and sent me for my first mammo. It turned out to be nothing....but they found the real thing on the other side. I go to the doctor when there is a reason...not for a "check up". I have no idea when this would have been found had she discredted me due to my age.

    At this point....I would get the ultra sound done. Durning the ultra sound, ask if there is blood flow. Do they think it is a reactive lymph node (the swalloen ones). How big do they think the lump is? If the tech can't find the lump, ask for a new one. In all honesty, I would demand a biopsy at this point regardless of their answers. However, if there is blood flow---it is NO QUESTION. Get it biopsied. It is not worth it to not be safe than sorry with your history.

    AFTER you have a biopsy, and you know what you are dealing with, then decide on your team. If it is nothing, have peace. If it is, then you worry about getting the right team together. For now....I would just insist on a biopsy. If they refuse, find someone else. Come back here and we can help point you to the best aread based on where you are located if its needed.


  • Giselle20
    Giselle20 Member Posts: 38
    edited May 2018

    Maybe consider an MRI if nothing is seen with mammo and ultrasound?

  • djmammo
    djmammo Member Posts: 2,939
    edited May 2018

    Mal1416

    To clarify, how long ago did you first feel something at the indentation? How long ago was the aspiration with the pink fluid?

    Not infrequently when one has trouble entering a cyst with the aspiration needle blood is introduced into the fluid from the surrounding tissues and it makes otherwise benign fluid appear pink. If the cyst appeared simple, that is no solid elements inside, one might assume that's what happened. Grossly bloody fluid is always sent to the lab especially if the cyst appeared complex on US.

  • Mal1416
    Mal1416 Member Posts: 4
    edited May 2018

    I have never felt anything obvious below the indention, I have several lumps or calcifications and they all feel about the same. There is one I think I've been feeling that is about the size of a sunflower seed and feels slightly different. The NP is the one that felt one and sent me for the first diagnostic mammogram. It was difficult to get it because the place said i was too young and it wouldnt get approved by my insurance. I had already spoke to my insurance and they covered it with a referral, but i could start screening anytime. 2 years ago when I first noticed the indention, my ob/gyn felt something she wanted checked out but because of just weaning my son, a mammogram couldn't be done and the ultrasound couldn't see anything.

    I also believed the pink fluid was caused by the difficulty getting the needle to puncture the wall. It was a darker pink but not quite red. I really didn't have any concerns when I left that day, I felt a little brushed over since my age was brought up so much but i trusted they wouldnt let that stop them from following protocol. I've had cyst aspirated in other parts of my body and only became concerned when the ache didn't seem to go away after a few weeks like they did when other cyst were drained. Around a month ago I noticed the indention had gotten longer and more defined, pulling my nipple down and in. I compared to my other breast and noticed that the bottom of the areola seems connected to something, when I pull up it elongated and forms a point whereas the other one just moves and maintains the normal shape. I've researched several articles and worry more about b9 conditions more common in my age group, but I keep goung back to the moment he had the biopsy needle opened and the concern of the NP. The radiologist told me he couldn't tell if the lumps were solid or fluid filled, or if they were simple or complex cyst because of the density. The surgeon pretty much blew me off from the beginning and told me his wife's breast felt the same. He told me she had a similar experience that came back b9 and she was 50, not 35. He didnt see the indention and the exam lasted only 30 seconds before he told me there was nothing there. He was about to send me out when the nurse came back in and he sarcastically asked her if she saw anything. She immedietly pointed out the indention and said it was pulling that nipple down. My middle finger fits down into the indention and both my mom and husband said they could see it. I can see it in the mirror, but the downward pull of the nipple is more obvious from my angle. I don't have a family history at all because my mom was orphaned by 9 and I was adopted by my dad. My family history includes stomach, cervical, lung, bone and skin cancers from my mom and her siblings, my biological father had a brain tumor and throat cancer and that's all I know. I pick up emotions pretty well and the NP and ob/gyn radiate concern and suspicion. The NP went from laughing and joking to silent and withdrawn while doing my exam. She was not happy the biopsy wasn't done esp since it came back so quickly and wants a definitive answer which is why she wanted to send me to the breast center. She also did more blood work and my white count is still elevated so there has to be something somewhere my body is fighting, the cyst could be infected which would explain the lymph nodes in that area being enlarged and the white count being high for 6 months. The surgeon and radiologist seemed more focused on my age than anything. Even the nurse with the radiologist looked shocked he didn't biopsy and told me to call my Dr when he left the room. It was just a vibe i got and i noticed their facial expressions, but the radiologist and surgeon really do make me feel like I'm wasting their time.

  • Ashtog
    Ashtog Member Posts: 16
    edited May 2018

    mal, I’m so sorry you’re in this situation. I have that indent thing going on too, and also the age thing- I’m 33 and my gp probably told me 7 or 8 times in the 10 min he spent before doing the exam that I’m too young for BC, that we don’t screen in Canada til 50 etc. Then after my exam when he found a lump that I didn’t, he continued to say that because of my age he doesn’t think it’s concerning but he would put the requisition in for an ultrasound and mammogram just to be safe. I just weaned my 16 month old too (you and I have a lot in common apparently.)

    Advocate for yourself. If you don’t think they’re doing enough find someone who will. Hugs.

  • Mal1416
    Mal1416 Member Posts: 4
    edited May 2018

    The radiologist said because it had fluid it couldn't be cancer, cancer would be solid and not have fluid. I found out that wasn't true afterwards from my friend. The surgeon is sending me back to the same radiologist and I feel like I should have just told my NP I would wait for the breast center opening in a month instead of the week for the surgeon. It's been a month now since I had to schedule another mammogram and ultrasound. She wanted a biopsy done asap and didn't want to wait a month for a consult, guess she shpuld have just sent me there lol!

  • Mal1416
    Mal1416 Member Posts: 4
    edited May 2018

    ashtog,

    I originally thought the indention was from losing the weight from pregnancy and weaning. I lost the weight really fast and figured it was extra skin similar to my stomach. The obgyn thought it was tissue loss and wanted to monitor it because they couldn't explain it. My youngesy was preemie and had respiratory problems so he was only 4 months old when he weaned and I was already smaller than pre pregnancy weight. He has asthma at almost 3 so maybe it was just too hard to nurse when he had trouble breathing. I was engorged a loy when him because of his difficulties and pumping didn't help, I blamed the indention on the stretching from engorgement and that side always seemed to be clogged and wouldn't release the milk most times.

    The radiologist was very clear my age meant it was almost impossible for me to have breast cancer. Now, thinking about it I wonder why he didn't order more imagining since he admitted he couldn't tell if it was solid or fluid filled? He was pretty convincing since it drained it was nothing, my friend is the one who informed me hers had done the same and refilled within 2 weeks. If I didn't have my NP convinced it is not a cyst I would probably just let it go completely

  • Ashtog
    Ashtog Member Posts: 16
    edited May 2018

    Mal are you having a biopsy done then? I hope so if your np is concerned.

    I noticed the indentations on my lower left Breast, and thought it was due to breastfeeding. It’s more noticeable when I raise my arm above my head.From the bottom looking up you can see the shape is off, also the shape of that Breast from the front is kind of squared off at the bottom as if something is pulling it up out of the rounded shape, if that makes sense? Also my nipple pulls in. When I nursed my daughter on that side I tended to have a harder time getting as much milk, I just chalked all this up to breastfeeding things. But my right breast looks normal, and then the dr felt a lump (or several. He said my left Breast was lumpy)

    Anyways, I’m terrified. But my ultrasound/mammogram is scheduled for Thursday morning, I hope to get some positive answers then and am praying you do too!

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