照顧罕見分享軟組織(肉瘤)資訊! - 抗癌

因為這個疾病太罕見了 連去找國內的醫師都說只看這個專門的會收不到病人.(高雄長庚)

後來搜尋了一下 這個疾病在美國還不算少見!! 也可能是人多 所以數量多

其實看來看去 主要還是以手術為主 雖然棘手 但也希望大家別放棄希望!

分享國外網站

http://community.macmillan.org.uk/cancer_types/soft-tissue-sarcomas/default.aspx

看懂英文的可以有空上去好好看 有很多病友的分享!!

另外看到網站的以下文字也心有戚戚焉 真的是such a horrible feeling!!

I read in another post about a woman who had an inexperienced doctor tell her
she had no hope. We had two similar experiences and it is
such a horrible feeling to try and shake.
I am struggling to cope emotionally and mentally right now.
All that consumes me is that I am going to lose him.
He is so positive and thank god for that because I don't know what
I would do without him.

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