Fibrocystic breast disease as the diagnosis...I'm kinda pissed

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E_cupcake
E_cupcake Member Posts: 7
edited October 2016 in Benign Breast Conditions

This whole journey, I have felt dismissed. 36 y/o prolactoma on my pituitary gland and in July felt the lump in my lower right breast. When to PC told me to wait a cycle and come back. Went back after a month and it had gotten bigger. Referred me to get an u/s and nothing showed up. The lump was still there and getting bigger. Referred me To the BS and excisional biopsy was scheduled for 5 weeks out. He told me It was probably fibrocystic disease because of my age. 2 weeks before surgery, a lump appeared on my right breast. He sent me for another u/s and mammogram. Again, nothing could be seen. The biopsy was done and what do you know, confirmed. Dense breast tissue and the tumor was 76% stromus tissue 24% fattier tissue, so the Dx was fibrocystic disease. Monitor and wait to see what else happens or grows. Don't women who have this slowly biopsy their breasts away!? Is there anything else I can do!? My breast hurts so much since the surgery, I am frustrated and I feel dismissed. Can anyone relate? It would help my sanity to know other women who have had or are on a similar journey.

Comments

  • wrenn
    wrenn Member Posts: 2,707
    edited October 2016

    You can always object to biopsies but I personally would want a definitive answer so I would see it as a good thing to have them take action and reassure you that it is indeed benign. I might not be understanding what your complaint is though I will admit.

  • E_cupcake
    E_cupcake Member Posts: 7
    edited October 2016

    ugh I can't deletnthe post. Yeah...emotional rant.. Disregard!

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited October 2016

    E_Cupcake, 60% of women have fibrocystic breasts, so it doesn't mean that that many of us have our breasts biopsied away

  • E_cupcake
    E_cupcake Member Posts: 7
    edited October 2016

    thank you! I had an emotional rant and I can't delete the post. I'm totally over reacting... Sorry!

  • ravzari
    ravzari Member Posts: 277
    edited October 2016

    I get why it's frustrating.

    Up until my BMX (strong family history of BC, so I elected to take that route), I had fibrocystic breasts since the dang things grew in.

    Trying to find lumps for me was like feeling for lumps through the lining of a sack full of lumps wrapped in more lumps, it was just ridiculous and, in my case at least, incredibly painful even when I wasn't doing self-exams; they were just always painful, lumpy, lump holders for me and for all of my life doctors just dismissed it (and the pain) as normal, which was frustrating as I knew that it wasn't necessarily normal to have breast tissue like that.

    From about age 8 (early bloomer) to 32 I was told it was 'normal', 'caused by your cycle', that I was overreacting about what I found/felt, etc...it's really a problem for a lot of women to have their concerns dismissed by doctors (doubly so for male doctors in my experience, though I've had some pretty dismissive female doctors too) as 'overreacting' and being told something is normal when it's pretty clear it's not. That kind of treatment is also why I suffered with severe endometriosis from, well, age 8 to about 32, because everyone I saw told me that all the symptoms I was experiencing were normal (even my mom said it was normal because HER doctors told her it was normal, surprise, turns out she also had severe endometriosis and fibrocystic breast disease along with one occurrence of BC that was nearly missed because of it and her doctor dismissing her concerns at first)--until I was 32 when I got a new gyno who, after hearing my symptoms, kind of made a horrified face and said, "HOW long has that been going on?" followed by, "Yeah, you have endometriosis, we can treat it with either an IUD, depo, or a partial hysto." (I went with depo for now, planning on the partial hysto in the next couple years).

    While I was happy to finally have my issues eventually fixed, when I think back on how many medical professionals just dismissed my symptoms or complaints out of hand as 'normal' or 'part of your cycle' it really does make me angry as I suffered needlessly for the majority of my life because they couldn't or wouldn't listen and take me seriously.

    So yeah, I totally get where your frustration is coming from, because it IS frustrating when you're not having your concerns being addressed properly by a medical professional.

  • wrenn
    wrenn Member Posts: 2,707
    edited October 2016

    AMW, I think the concerns were addressed. I don't think the physicians can be blamed for cystic breasts. They followed protocol for the concerns and diagnosed the problem. What else could they have done?

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2016

    "Fibrocystic breast disease" is now more correctly referred to as "fibrocystic breast condition" because it is not a disease. It is a normal condition that occurs in 60% of women. It can cause breasts to feel tender and lumpy and sometimes very painful, but for those of us who have fibrocystic breasts, that is (unfortunately) the normal condition of our breasts. And yes, the severity of the condition does fluctuate with our menstrual cycles.

    What's most important is to understand the landscape of your breasts and how they change over your cycle. Learn which lumps are normal for you so that you can identify new lumps that develop. When a new lump develops, see if it changes over your cycle - it might disappear by the end of your next period. If not, get it checked out.

    I've had severely fibrocystic breasts all my life. That means I've had lots of call-backs and a few biopsies and more cyst aspirations than I can remember (and I still have a few smaller cysts now). While not fun (to put it mildly), I always understood that it was just the luck of the draw that I was saddled with such painful and lumpy breasts - but that they were normal. Because of my fibrocystic breasts, I was always careful about ensuring that I got my annual mammogram and I believe that's why I was lucky enough to catch my breast cancer (which was completely unrelated to my having fibrocystic breasts) so early. In the end, for me it turned out that having fibrocystic breasts, and therefore being so breast aware, was a good thing.

    http://www.mayoclinic.org/diseases-conditions/fibr...


  • ravzari
    ravzari Member Posts: 277
    edited October 2016

    wrenn , there can be a difference between what the doctor thinks is 'adequately addressed' and what the patient thinks.

    I'm sure every doctor I had was certain they'd adequately addressed my concerns, despite the fact that I didn't feel that way and told them I didn't feel that they had addressed them or were taking them seriously. Most didn't even bother to ask if I had further questions or concerns after they explained a test result or a diagnosis to me, they just gave me the info and the appointment was, more or less, over.

    Even if the doctor is correct, and the patient really is overreacting, it's still partially up to the doctor to discuss it with them in a way that still gets the information across in a way that the patient in question can understand clearly, and helps calm the patient's fears, especially if the patient in question is worried about the possibility of cancer or the possibility that they'll have to come in for repeated surgeries for a benign condition.
    Most people don't overreact for no reason, it usually stems from them having some level of anxiety about what's happening to/with their body and not fully understanding what was told to them by the doctor.

    It didn't sound, to me, like the OP felt her concerns were being addressed fully or that her questions/concerns were answered to her satisfaction by her doctor and I understand that level of frustration as I've been through it before many times.

  • wrenn
    wrenn Member Posts: 2,707
    edited October 2016

    I'm sorry you have run into so many doctors who you didn't feel were adequate. I have mostly been pleased with docs but occasionally come across a shitty one. I understand that benign or chronic conditions can frustrate and doctors often focus on the life threatening diseases but should also explain fully.

    Best regards.

  • E_cupcake
    E_cupcake Member Posts: 7
    edited October 2016

    Amw Thank you so much! I cannot tell you how your reply has helped to calm and soothe my anxiety/emotions. Time to gather my bootstraps so to speak, and do what I can to get more educated. You have helped so much! It's amazing how a shared experience can bring about a sense of 'I'm not alone' Thank you!!!! Xoxo

  • ravzari
    ravzari Member Posts: 277
    edited October 2016

    E_cupcake, yep, I (and probably a lot of other women) learned the hard way that I have to be my own loud, educated, pushy, "un-ladylike" advocate with doctors sometimes, especially if I was left with the feeling that they weren't taking my concerns seriously or weren't listening beyond what agrees with the diagnosis they made.
    Nobody likes to be wrong, of course, but I think sometimes some doctors forget that they're human as well and that it's possible for them to make a mistake in diagnosis or treatment plans, or for them to assume that every patient they have is as well educated on a diagnosis or health issue as they are, so they don't bother to explain it fully and just make the presumption that their patient already knows.

    In some cases, it meant I had to cut ties with certain doctors and find new ones as I had a few that absolutely seemed to hate patients who questioned them (I literally had one doctor level a cold stare at me and say, "Which one of us has the degree here?" when I questioned his diagnosis and treatment plan--spoiler alert: His diagnosis turned out to be WRONG, which is most certainly why his prescribed treatment had no effect, and I got a proper one from a different doctor with proper, effective treatment to go with it!) or their diagnosis/treatment plans or who didn't like having to "dumb down" to explain something in a different way if I didn't fully understand what they were explaining to me the first time around and, to me, that's just not acceptable.

    That's certainly not to say all doctors, or even the majority, are like that but man, sometimes you do just run into one that's got the interpersonal skills of a hornet whose nest has just been stepped on.


    And honestly, if a patient is still upset near end of an appointment, it really is on the doctor to try and find out if it's because they just received terrible news or if it's because they misinterpreted or didn't fully understand what was told to them and are having a reaction based on incorrect assumptions on their part. Saves a lot of trouble and stress down the road if they just take the extra time to make sure their patient fully understands what's going on and fully understands their treatment plan.

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