I am 28 years old and have now had 20 Fibroadenomas removed in 4 seperate surgeries. My first 2 (one from each breast) were removed when I was 16. The adenoma removed from the left breast was the size of a lemon and from the right was the size of a lime. My second surgery (21 years old) entailed the removal of 9. Third surgery (26), 5 were removed. This past years I had come acrossed more but one imparticular, was extremely painful, and woke me up often throughout the night. In August I went in to have this particular on and the others removed. 4 total were removed in this fourth surgery. Unfortunately once the swelling had finallly gone down enough to do my first post-op breast check I found the one I had gone in for specifially had been missed. When I went in for a follow up the ultrasound they imaged the one missed as well as found another four in the same breast at only 2 months post-op. I am now being told that a double mastectomy and reconstruction in the only option I have left. For that I am terrified! My adenomas seem to not follow the typical characteristics, they do not regress and just continue to grow larger and larger for one. They are now growing in more excessive number at a faster rate than ever before. So has you can imagine I am totally lost on what to do next. My surgeon says there is not enough research to answer my questions and concerns. I have come to except that this is a part of me and I just want to know and understand what is going on inside me. Maybe someday be a part of the answers to questions that can't be answered yet. I figure the first place to start is to get as much knowledge about my unusual experience with fibroadenomas. So my questions: Are there other breast masses commonly mistaken for fibroadenomas? Could there be another issue somewhere else in my body that could be causing this? If not is there a specific named for what is happening to me?
You are certainly in a most unfortunate situation but I doubt that you are alone. Hormone levels are sometimes related to the growth of Fibroadenomas but this has not been proven without doubt. I agree that bilat. mastectomy would be the only answer as a relief for you from all these numerous surgeries. There would be nothing to fear from this type of surgery and it no doubt would put an end to this constant occurence of more tumors. Please know that all Fibroadenomas do NOT regress ... they more often than not just continue to grow. Cysts may lessen in size as they are definitely related to hormonal levels. By the way, have your hormone levels been checked to see if they are unusually high ?? This might give you at least a partial answer and if they are elevated there may well be some relief there in the way of medication to reduce the production of these hormones. Just a thought that you might explore. If you obtain any additional information along this line please return and post it here as a comment to this original thread. Yours is truly an unusual and interesting case. Regards ....
Thanks you so much for your input. I truly means a lot more than you know! This has been quite the struggle the past few years just due to the lack of information i have been given. To answer your question, I have in fact had my hormones levels checked quite resently and all came back within normal limits. As for the bilat mastectomy, the only thing that truly concerns me about making the decision is they can't guarentee they can remove all the tissue in my breasts so there will still be the risk of the adenomas coming back. then they will be having to remove them from around the implant. Due to the lack of information I have been given regarding fibroadenomas, I want to make sure I have all the information I can get before making the inevitable decision of a bilat mastectomy at 28 years old. Again I am truly grateful for your shared knowledge with me! Sarah
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