Multiple Fibroadenomas in both breasts

hi all
imnew to this site :slight_smile: ok so iwill try and explain my story its very long so bare with me was just wondering if anybody had expericed the same kind of story ok here goes.

im 25 years old foundmy first lump at 14, my mum also had multiple fibroidanoma but had a double masectomy with reconstuction 20 years ago when she was 30. i had thisfirst lump removed after this theyjust kept coming up got bigger very quickly. so they sent me tohave the mamotone thingy but iwas bruised so badly they also said there were far to many tokeep doing like this. so they refered me to london tohave them lazered buton the second treatment they gave me 3rd degree burns and left the lump incierated and had tohave a wound nurse remove it slowly which left a deep hole in my breast 3 moths of packing later it started to heal but left me with a very horrible scar so after this i was extreamly upset and was scared. also did nothelpmy problem they still were coming upvery quickly so went back and had another 4 removed they went through the nipple to minamise scaring. i then fell pregnant with my first child andthey the went a few months after my son was born they come back buteven worse so had another 4 removed i then fell pregnant with my second son again they went and again they come back again this brings us up to where iam now.recently been for a scan i have 12 in total on there way up. i basicly broke down as the woman said uhave tomany to keep removing, which is fine but there is no long turm plan in place, finnally spoke tosomeone who can help me he said that they willnot do a double masectomy for fibaroidanomas unless there is sugnificant evedence for breast cancer sohes sending me for family history testing. i have been asking forthisfor years as its something that really worrys me withmyfamilyhistory of breast cancer. he said that if icome backlow risk what they can offer due to the amount of fibaroidanomas and sugnificant scaring due tothe burn and past treatment is a mestopexy not sure how uspell it. both options iknow rquite bigs ops but i reallyhave had enough of this now sometimes icant even cuddle mychildren as im in allot of pain. when i was reffered uptolondon the doctor told me iwas a rare case and they where going toput me in a medical jernal but of late im realising im not the only one with this and maby they just told me this so icould be a guinni pig forthere newlazer tratment
sorry about the essay butithought i should share my experiences

natalie xx

Hi Natalie,

You’ve come to the right place for some good, honest support from the many informed users of this site who I am sure will be along soon to offer that support. In the meantime our helpline staff are just a free phone call away if you need to talk, 0808 800 6000 lines open 9-5 Mon-Fri and 10-2 Sat.

Take care,

Jo, Facilitator

thankyou very much jo :slight_smile: x

My goodness Natalie You really have had your fair share of it! I have absolutely no experience of this just wanted to say hello and I do hope you get things sorted once and hopefully for all!
I am sure someone with more help and advise will be along shortly
Good luck with the gene tests and good luck with whatever route you decide to take
Best wishes and take care
Jill

ty jill :slight_smile:
im glad ive come across this forum as reading some of the other posts makes me feel less like im on my own with this codition
xx

ok so iknow no one has replyed to this post but thought i would give a quick update…

so have had a letter from the hospital explaining what happend at the last appointment and does explain i will be contacted by the breast care team for talking about family history and also seeing the my other doctor in 3 months to discuss the mastopexy to remove the lumps and hopefully get rid of the scar leftby the lazer felt like ages to get anything fromthe hospital was slowly thinking they had forgot about me xx

natalie xx

Hi Natalie,
My grandaughter (24yrs old) has had same problem as you, multiple fibroadenomas in both breasts and also has had traumatic experience when having them removed had a massive bleed and had to be operated on again, I did some research and found that there is a treatment called cyro therapy however dont think it is in this county yet although used in other countires this is where they freeze the lumps. I beleive they have a good sucess rate. Its very ditressing and worrying that the only answer is double massectomy. Anne.

hi anne
i get really scared when i hear the word new lol due to past experiances, i was due to go in for a mastopexy but am pregnant sowill have to wait untill bubba is born they have offered this treatment as have horrible scaring due to a 3rd degree burn from the lazer :frowning: the lumps i have at the moment are getting to be huge im just hoping that it dosnt result in even more of a disfigurement i willget there in the end my main concern is the bc in my family but am seeing the brest cancer nurses in september so hopefully will get somewhere with that x

hi natalie, my grandaughter has the same, we found a treatment called cyrotherapy, and she had it carried out and treated all but two of the lumps, the rest have shrunk painless treatment done in an hour with no scaring.

Hello
I’m 23 years old and my first Fibroadenoma was at 18 and was fairly large. I got it removed and tested and everything was fine. I had another 2 smaller ones that I didn’t have to get removed. In the last couple of months I felt another large mass 4.4 cm x 2.3 cm on my left breast and went to my doctor. She sent me to get another breast ultrasound. Radiologist told me I had another 2 new ones and that the other ones were stable. Told me not to worry that it is also Fibroadenoma. A couple of days later my doctor got the results and suggested I go back to the specialist to check it out. I went yesterday and he told me that it is most probably what I had the last time but sent me to get my breast ultrasound film so I can give it to the breast care center at my hospital to see if I should get them biopsied.

I felt ok and did all my errands for that today when I saw my written results from the radiology center. It states that the 2 masses are solid hypoechoic irregular masses with angular margins. Width being larger than its height. Googling all this it scared me seeing that angular margins are one of the characteristics of a malignant mass. My doctor also told the breast center that he was concerned after he told me not worry and that this wasn’t dangerous. All of this is freaking me out. I don’t no if he just said that so they can be quicker with an appointment for me or if there is something he is not telling me. I just want to know if anyone has shared a similar experience and if I should worry. I now have to wait up to 2 weeks for them to call me after they watch the film and decide if I need a biopsy. I thank you in advance for any responses:)