fibercystic disease

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mlh031712
mlh031712 Member Posts: 6

I was wondering if anyone has had this happen or can help. I just had tissue removed from my left breast as my dr stated that it was extremely lump and fibercystic and was causing a lot of pain. The procedure went well but it did not relieve the pain and there is also pain in my right breast. My surgeon stated that he was not going to be super aggressive this first time just in case removing a minimal amount of tissue relieved the pain. He said that he can always go back in if need be. My concern is, if he has to go back in and remove more from the left and now from the right and it changes the shape and appearance of my breasts, what options  do I have? I know he had explained to me that he had previously performed the same procedure on another patient who had the exact same problem but after he removed the breast tissue a plastic surgeon went in and reconstructed her breasts for her. I'm just not sure at what point that is necessary or even covered under insurance for fibercystic disease. Help anyone!

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  • leaf
    leaf Member Posts: 8,188
    edited May 2014

    This NIH article says that up to half of all women have fibrocystic breasts at some time in their lives. So many people think its a misnomer to call fibrocystic breasts  a 'disease', because its so common.

    http://www.nlm.nih.gov/medlineplus/ency/article/00...

    From what I understand, unfortunately, they can't always find out what causes breast pain.  From what I understand, there's no guarantee that if an area is removed that the breast pain will go away.  But I'm no expert.  I hope others will post their experience.  I've never had lumpy breasts.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited May 2014

    I have a lot of friends who have fibrocystic breasts, two contributors I have heard about is coffee and high fat diets (along with hormones).  I don't know if reducing the amount of these from your diet is going to help, but it is a cheap option, and not too hard to give a try?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2014

    evening primrose oil is also supposed to help decrease the pain of fibrocystic breast disease (FBD) as well as decreasing the intake of caffiene,

    anne

  • wrenn
    wrenn Member Posts: 2,707
    edited May 2014

    I am surprised he would resort to surgery when these things normally resolve over time. To me it's like removing your nose if you get a pimple on it. I think you need a new doc.

  • DiveCat
    DiveCat Member Posts: 968
    edited May 2014

    I also do not understand why your doctor is removing the tissue (is this random tissue, or an actual painful mass like a fibroadenoma?). Sometimes very painful or very large cysts or fibroadenomas need to be removed, but not often. More than 1/2 of pre-menopausal women have fibrocystic condition (the disease terminology is no longer used, as it is is not a disease). I had it as well. It can include pain, tenderness, cysts, fibroadenomas, and other benign growths. Usually there is no surgical intervention. The pain is often related to hormone fluctuations. Certain things can reduce the symptoms, like cutting caffeine, evening primrose oil. Regular exercise can also be of benefit as if reduces impact of hormonal fluctuations.

    Surgery itself is not generally recommended as it creates scar tissue which can cause difficulties in imaging later, and, well, it is just not a recommended course of treatment for fibrocystic condition which is considered a benign condition. Also, yes, it can have a cosmetic impact.  Likely if you just remove random breast tissue, the condition will continue to occur in other breast tissues.

    I do think you need a second opinion, with a breast specialist.

  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited May 2014

    What kind of tissue is he removing?  Is it a mass - like a fibroadenoma?  I had fibrocystic breasts, and although it wasn't a fun thing to have, I can't imagine surgically removing random breast tissue in an attempt to alleviate pain.  For me, cardio exercise was the thing that helped the most. 

  • WolfsLady
    WolfsLady Member Posts: 111
    edited May 2014

    Count me into the confused group.  Did you have a needle biopsy first to determine what he felt needed to be removed?  It's never good to go in there and just start cutting things away without a reason.  I have very lumpy breast even without the b9 extra's they've discovered so far.  I've been told since I was young that my breast were fibrocystic and very dense.  But no one has ever suggested removing anything that wasn't something more.  It would worry me to have a doctor who seems so caviler about it.  At least that's the way it sounds from the limited information you've given.  I'm thinking perhaps we missed something.  

    I was advised not to remove my extremely low risk fibroadenomas (I have 2) unless they grew and started having problems because scar tissue can obscure things that are much more sinister.  However as others have stated those can sometimes grow very large and cause problems.   That would be a reason to remove one. 

    I've always had some pain at certain times of the month but since my last biopsy (Interductal Papilloma + other things) I've had more and different pain.  The doctor is going to remove that lump mostly because, even though all the things found are B9 there is some risk that it could be, hiding something more or become cancer.  I have enough family history to be cautious, too.  She warned me that as far as my breast pain goes it's impossible to know if the surgery will help it.  I'm praying that it does.  I hope that this relieved your pain but if not I'd consider getting a 2nd opinion before any more surgery if your doctor hasn't give you a dx besides fibrocystic disease. 

  • Annette47
    Annette47 Member Posts: 957
    edited May 2014

    I too agree you need a second opinion as removing tissue is not a standard treatment for fibrocystic disease, and most likely will not alleviate the pain.   I did want to throw out there though, that if you are really in extreme pain from this, Tamoxifen has occasionally been used to treat it, although since that has it's own risks and side effects it is usually only used in extreme cases.    I will say this though - I am on Tamoxifen because of my cancer, but it has significantly reduced the amount of fibrocystic pain I have (which I have had most of my life in both breasts).

  • mlh031712
    mlh031712 Member Posts: 6
    edited May 2014

    I'm sorry, I didn't provide enough information on my situation. I've tried all of those things that everyone is suggesting and I really appreciate everyone's feedback. My dr is a breast doctor and he did leave it up to me about the surgery. Since nothing else was working and we had tried all of the other things I thought it was at least worth a shot. He did tell me that he has had other patients with the same symptoms and everything and the procedure to remove the tissue really helped them. I'm sorry that I didn't provide all of the details. Thank yuo again for everyone's help!

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