A few B9 conditions

alicki
alicki Member Posts: 661

hello,

Anybody had these in their path reports :

1) floral florid fibrocystic mastopathy

2) fibroadenomatoid mastopathy

3) laciferous ductal ectasia

4) aprocine metaplasia

Thanks for sharing any personal experience you be had with these conditions. I don't have atypia in any of these conditions. Am wondering about Bilatral mascetomy for peace of mind. 

Best

Alicki

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    Those are all just fancy terms for fibrocystic breasts which 60% of women have and don't raise your risk to develop cancer significantly, if at all. Why would you want a mastectomy for that?

    I think the question really is why you are seemingly so overwhelmingly anxious about your breasts and why you seem determined to believe that there is something seriously wrong when it sounds like literally dozens of doctor visits and tests have told you there is not. 

    Anxiety is awful. I think most of us have had periods in our lives when we experienced it to one degree or another. I'm sorry you are experiencing this.

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Hello,

    I think I should explain myself. Last July, I woke up to extremely painful breasts. Shortly followed by an outburst of fatty lymph nodes (which I still have), redness, thickened skin and one breast growing a bit bigger than the other. The local hospital put me under surveillance for IBC, not quite sure if I had cancer or an episode of mastitis (not lactating). They never gave me a diagnosis and left me lingering, with comments such as 'well if it's IBC, it will show up sooner or later'. 

    I was alone.

    So I went to see various specialists (abroad and the very few here) and all excluded IBC (inflammatory breast cancer) without telling me what had happened to me. In this process, I lost 18 kilos, why I don't know. I finally decided to get a breast reduction as a way to get some answers because even MRIs were not giving answers. The biopsies was just saying  that I had inflammation That's when I found out that I had Fibrocystic breasts and hyperplasia of the skin. The pathologist who I know and trust 100%, told me that I would need to be checked twice a year. 

    I  hope this explains why I am anxious. I am working on being less anxious, but all this fibrocystic breast issue is totally new to me. The only thing that I'm happy about is that I know now what explained the happenings of my left breast. I had a hysterectomy in 2010 (internal endometriosis) and at that time, I did not have fibrocystic breasts (exams done). I don't have dense tissue but fatty tissue so at least I don't have that issue.

    THank you for replying to my query and I apologize if I come across as a little mad. Switzerland is a small country and there are very few Breast surgeons. Here OB/GNY usually do breast operations, because there's no specific breast surgeon training, OB/GNY train for 'top' and 'bottom' and then some of them specialize in 'top' or 'bottom', mostly 'bottom' if I am making any sense, lol! There are a good few, but few, and even fewer in the French speaking part of Switzerland where I live

    So, I guess that's why I'm a little cranky (and I avoid Dr google because I would go mad). That's for the information you have provided me with.

    alicki

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2014

    Alicki, I posted what I did because I have read all your threads for a long time, including the very long one with Faery about IBC, so I understand the entire context.

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Hello,

    Ok, then. I didn't know and thus wanted to explain. 

    THanks for clarifying

    Alicki

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Hello,

    I didn't know we drew such attention, lol. Thinking back we should have moved it to PM messages, which we did at the end.

    Feerie is ok, I think.

    Best

    Alicki

  • DiveCat
    DiveCat Member Posts: 968
    edited March 2014

    Alicki, 

    As Meliissa pointed out, fibrocystic condition is very, very common. I myself have very fibrocystic breasts. They can be quite painful and lumpy at times. But, having fibrocystic breasts does not itself make you high risk. Having benign conditions does not itself make you high risk. Your previous exams may not have shown benign conditions like this unless you had certain imaging or biopsies. Not all fibrocystic conditions can be found by feel or even imaging alone.

    I am sorry to hear you do not feel like your doctors have given you answers to what happened before, but no, I would not recommend a mastectomy for fibrocystic breasts and benign conditions.

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Dear Dive Cat,

    Thank you for your clear answer-

    Much appreciated

    alicki

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Dear Dive Cat,

    So, your upcoming mascetomy is linked to the family context? We don't have any breast cancer in the family. (They all go insane, lol and that's probably where I'm trying not to head).

    Best to you,

    alicki

  • DiveCat
    DiveCat Member Posts: 968
    edited March 2014

    Alicki,

    Yes, I am having a prophylactic mastectomy as I am at high risk for breast cancer due to hereditary risk/family history  - this includes multiple generations with pre-menopausal and aggressive cancer with rather unfavourable outcomes. 

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Dive cat,

    i wish you all the best for your surgery and thank you for taking the time to reply to me

    alicki

  • TotallyBlessed
    TotallyBlessed Member Posts: 125
    edited March 2014

    Hi alicki, I certainly understand any anxiety related to breast health.  I've been blessed (said tongue in cheek;) with fibrocystic breast issues for over 20 years.  In my younger years I dealt with breast pain that would cause me to wince each time I removed my bra just prior to my cycle. My Dr. assured me that these symptoms would ease as I entered menopause - which they did. I've spent many years visiting the mamo machine twice a year. That's the smartest thing I could do (self breast exams too). 

    Stay pro-active and try not to stress (yes, I know, easier said than done :). Its your best arsenal for a healthy you :)

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Hello,

    Thanks and sounds like good advice. This fibrocystic breast thing only came out after I removed my womb and had a breast reduction which told me what had been going on. Here in Europe, they say it's unsafe to get two mammos a year and we usually do one every two years because of the radiation. 

    Your advice is straightforward and very sensible. My breasts had behaved themselves until I was 40 and then had  dreadful pain, redness, (read above for the rest) and suddenly fatty lymph nodes, still there. 

    I go to the local breast surgeon here (one of the best in Switzerland) and am also seen once a year by a Breast specialist and Breast radiologist (among the best) in England. If I have learnt something from these boards, is not to see always the same doc or radiologist, because four eyes are always better than two.

    Moreover, I will try and get a MRI to follow up the 3d mammo done here by Swiss specialist. Meantime, I need to learn to relax. Weirdly, I also have a cyst on my kidney 0.5cm (Bosniak 1) and 12mm cyst on abdominal wall. We watching them every six months with MRI, but they are causing me ANY anxiety. I even refused to have a laproscopy to have the 12mm cyst removed. I will re-evalate in 6 months if necessary

    So being pro-active? definitely. 

    Best

    Alicki

  • geekyknitter
    geekyknitter Member Posts: 187
    edited March 2014

    It's pretty common for fibrocystic breasts to become more inflamed and painful leading up to menopause.  It's very likely, as others have pointed out, that you always had fibrocystic breasts, but never had extensive imaging done before that they would show up on until now.  Even IF you did develop fibrocystic breasts later on, it wouldn't be a red flag for anything, although they definitely CAN be painful.  Mine are and grow moreso each year, but they're otherwise harmless.

  • alicki
    alicki Member Posts: 661
    edited March 2014

    Dear Greekyknitter,

    Thanks for your answer, especially the bit about inflammation. I'm going to get some more lymphatic massage done, and I should be ok. Anyone had any experience with fatty lymph nodes and FB?

    Cheers,

    Alicki

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