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Old 05-27-2013, 03:51 AM   #1
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Felix16 HB User
Fibromatosis

Hi, Is there anyone who has any information on treatment for Fibromatosis of the breast?

 
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Old 06-15-2013, 12:59 PM   #2
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Tmxangel HB User
Re: Fibromatosis

Hi, I've not long been told I have desmoid type fibromatosis in my breast, I've already had surgery to remove lump. I've been referred to a hospital in London, and go for my first meeting with specialist on mon(17/06/13), and for an MRI scan in 2 wks. Fingers crossed i will find out what happens from now on, and will reply on thread again if I do!

 
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Old 06-16-2013, 02:28 AM   #3
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Re: Fibromatosis

Quote:
Originally Posted by Tmxangel View Post
Hi, I've not long been told I have desmoid type fibromatosis in my breast, I've already had surgery to remove lump. I've been referred to a hospital in London, and go for my first meeting with specialist on mon(17/06/13), and for an MRI scan in 2 wks. Fingers crossed i will find out what happens from now on, and will reply on thread again if I do!

Hi Tmxangel,

Thanks for replying. I was diagnosed in January 2013. I am due to have my third operation next Friday. Like you I initially had the lump removed but needed to have a re excision as the margins were not clear. The margins were still not clear after the re excision so I am having more tissue taken away next week. There is not a lot of information available about this on the internet and what is there can be conflicting. I have not had a great deal of info from the hospital either as they have only seen one case before. I am hoping for more info on Friday so will let you know. Good luck on Monday

 
Old 06-16-2013, 02:32 AM   #4
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Re: Fibromatosis

Hi Tmxangel,

Thanks for replying. I was diagnosed in January 2013. I am due to have my third operation next Friday. Like you I initially had the lump removed but needed to have a re excision as the margins were not clear. The margins were still not clear after the re excision so I am having more tissue taken away next week. There is not a lot of information available about this on the internet and what is there can be conflicting. I have not had a great deal of info from the hospital either as they have only seen one case before. I am hoping for more info on Friday so will let you know. Good luck on Monday

 
Old 06-16-2013, 02:59 AM   #5
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Smile Re: Fibromatosis

Hi felix16
Thanks for getting back to me.
Good luck next Friday, I really do feel for you, having to have a third op, just the 1 ive had so far was bad enough, but hope all goes well for you.
Not that I wish this on anyone, but it is nice to speak to someone in sort of same situation. Same with you the doctors I've spoke to so far didn't have a clue about this, but they referred me to a hospital in London, and have been told they can explain more( I'm hoping ).
Will def get back to u tomorrow after I've been, if I have any more info.

 
Old 06-22-2013, 05:05 AM   #6
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Re: Fibromatosis

Hi Tmxangel,

How did you get on at your appointment on 17th? I had my surgery yesterday and waiting for results which I will get on 23rd. Hope you are feeling ok?

 
Old 06-23-2013, 02:24 PM   #7
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Re: Fibromatosis

Hi felix16
Sorry it's taken a bit to get back to u.
How did surgery go last week? Hope everything went well, and your not suffering too much now! My appointment went well last week thanks, the specialist I'm seeing from now on, has dealt with this condition once before. Which is good as my hosp had no idea! I've got my MRI scan on fri, and get results 2 weeks after. She explained to me if it has come back, even tho it's an aggressive type, it's a condition I can live with, would just need to take medication that stops it from growing. She said unless I feel I need it( like if it's causing me cosmetic upset) they shouldn't need to operate on me again, as long as the medicines doing what it should be. She seemed really good and new what she was talking about.
Did u say your specialists didn't know much this condition?
Tmxangel

 
Old 06-24-2013, 05:25 AM   #8
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Re: Fibromatosis

Hi Tmxangel,

That sounds really positive about no further surgery! will they monitor it for a while then to check it is not growing? The consultant I am under has also dealt with this once before and everything goes to another local hospital for a second opinion before they decide what they do. I guess this is good because they are being thorough but it takes so long to get results back when they are always sent to another hospital for second opinion. I will find out if the margins are clear when I go back on 27th to see consultant. So I'm hoping it will all be ok then. Good luck with the MRI Scan, let me know how you get on?
Felix16

 
Old 06-24-2013, 08:35 AM   #9
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Re: Fibromatosis

Hi felix16
Yes, if nothing's showing up on MRI scan, ill have to have a scan every 4-6 months, just to keep an eye on it. If it is showing it's starting to grow back, they will want to monitor me, to see how aggressive it is, then that's when I'll go on the medication I suppose! She did explain to me as well that there's a strong link between fibromatosis and colon cancer in family history, don't know if this has been mentioned to u before? But I was asked to try find out if anyone in my family has ever suffered with this.
Thank u, Good luck for results on 27th, I'm not going to get my MRI results till 19th July this is a long waiting game!
Tmxangel

 
Old 06-30-2013, 10:36 AM   #10
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Re: Fibromatosis

Hi Tmxangel

I hope your MRI went ok last Friday, you are right it is a long waiting game, 19 July seems a long way off. My operation went ok on 21st, but I am feeling quite sore this time, I guess its going in the same scar three times.

I haven't been offered an MRI scan and they haven't mentioned any links with colon cancer, it makes you wonder how much they actually know about this tumour.
My results were that the margins were much clearer and they will monitor me with a mammogram every year from now on. So, I'm hoping that's it for now for me, although I have been in this position before in January but was then called back to say the margins were not clear .
Good luck with your results from MRI - as you said on one of the previous messages - it is really good to talk to someone else who is going through the same thing.I'll let you know if I get any further info on this

 
Old 07-01-2013, 12:20 PM   #11
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Tmxangel HB User
Re: Fibromatosis

Hi felix16
MRI scan went ok, just very uncomfortable and not really something I'm looking forward to having again, but hopefully results are good and I won't need another one for a while!!!
Ill have my fingers crossed for u, that your all clear and that was your surgery, and hope your not in to much pain. I'm hoping I don't have to go through surgery again!
Where is your fibromatosis? If u don't mind me asking.
Hope to hear from u soon with good news, and ill let u know how MRI results go.
Tmxangel

 
Old 07-01-2013, 01:06 PM   #12
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Re: Fibromatosis

Hi Tmxangel,

I'm glad the MRI scan was not too bad, I hope your results are good news when you get them. My Fibromatosis is in my right breast, so I'm hoping the fact that I have had a lump removed and then tissue removed twice it won't be too noticeable. Its swollen at the moment so hard to tell.
Keep in touch!

 
Old 07-01-2013, 01:12 PM   #13
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Tmxangel HB User
Re: Fibromatosis

Same place as mine, mines just underneath so scars not really noticeable, I was worried about there being a big difference but it's not too bad.
Still keep getting niggling pains tho.
Yh ill keep in touch, and let u know my results. Ull have to let me know if u have any news before.

 
Old 07-01-2013, 01:47 PM   #14
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Re: Fibromatosis

Yeah I will let you know if I have any news or info. Mine is right at the front and very visible when I wear t shirts. I also have this keloid type scarring so have a silicone dressing which I wear for six months .

 
Old 07-19-2013, 12:14 PM   #15
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Re: Fibromatosis

Hi felix16
How have u been, hope alls been well?
Just wanted to keep u up dated and let u know I've been back today for my MRI results.
I've been told surgery was completely successful, and there's no sign of lump growing back, just need to keep an eye on it, and go back in January for another MRI to check things out again.
I hope uve had, or get some good news soon. Hope to hear from u soon.
Tmxangel x

 
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