因为这个疾病太罕见了 连去找国内的医师都说只看这个专门的会收不到病人.(高雄长庚)
后来搜寻了一下 这个疾病在美国还不算少见!! 也可能是人多 所以数量多
其实看来看去 主要还是以手术为主 虽然棘手 但也希望大家别放弃希望!
分享国外网站
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!!
另外看到网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.