Hi There, My name is Samantha im 23 and i have a condition called aggressive fibromatosis, the best desciption i have for this is a soft tissue non malignant-malignat tummor that is very localy agressive and recurring,an mine is rather infaltrive..but they do not metastasize like malignant cancers, but mine seams to send fealers or tubers out... it curntly takes up at larg part of my chest cavity, starting at the top of my ribs moving down between my ribs to my inner chest wall where it is so larg its squashing my left long and moved my heart to the right (its started growing round the side and front of my heart as well) i have had this before in my breast tissue where it was removed with no radio or chemo. now this one has been treated with tamoxifen and sulindac for 5 /6 months and that has had no effect at all.. i start caelyx tommrow, tho i dont know if i can face it, how are you suposed to handle this stuff.. ya know.. i wanted kids.. not a life sentance
FormerMember
Hi Sami_Princess
I was interested to read your blog as I have fibromatosis too (chest/shoulder). I have been on tamoxifen for a year and will be going onto caelyx soon. I feel that I dont get a straight answer from my doctors regarding caelyx - one of the team warns me about all the side effects (including risk of infertility, hair loss...) whereas a different doctor on the team says Ill be fine, that some patients can continue work at the same time, that Im unlikely to lose my hair or become infertile. Its hard to know what to believe.
It would be great to hear how you are going on with the treatment. Are you based in London? I am a patient at the Royal Marsden.
