Hello my name is Marie. I had a synovial sarcoma in my head and neck which is so rare . Most are in the joints.I was not given a good prognosis. I had 3 months of radiation with no chemo available. I was told at the time they did not have enough trial and error as in other cancers.They were very aggressive with the radiation because of this.It was in my right parapharengeal space.in my neck.THIS WAS IN 1995...YES 1995.One doctor told me the truth. He said it could go to my lungs or brain and kill me in 6 months.I begged him to tell me the truth and he did.
He was the Radiation Doctor I first went to.I did not get my treatment at his hospital but chose Unn. of PENN in Philadelphia P.A
I have had 5 small masses removed in 17 yrs. All benign.I lost my voice due to radiation and surgery. My vocal cords were paralysed. I had injecitons of chemicals in them and went to voice therapy to learn how to train mt vocal cords to work several times. The injections are not permanent.fix.They only last for maybe 2 yrs.I also was a candidate for a gortex implant in my vocal cords to make it permanent.It worked ,But my body rejected it and it dislodged a yr later.I had it removed and more injections.The muscles one my right side of my neck dont work and put a constant strain on the left side because they do all the work. This tends to be painful but I am used to it.
I am happy to tell you people live many years with this disease.I am proof.Be confident and hopeful.Have faith.Pray .
I know it is a nightmare at times.It never goes away.It is always with us.You can live. I was 33 when I was diagnosed ,Im now 51.Keep the faith .Be your own advocate. Take good are of your mind ,body and spirit.Live well, eat well ,SIMPLIFY!!!!!
We all know how you feel.You are not alone in this.