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Is there anybody with SS in the neck/throat region?


#1

I realy realy realy want to talk to you... please anybody.

All i read about SS is that people have them in the arm- or leg-region.

Why did it grow in my neck/throat region, i feel so allone.

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#2

my son had SS in the neck . I also know of another male in Maine that has it in the neck. My son was 33 the guy in maine I think is 37.


#3

Hi,

Thank you verry much for sharing... how is your son doing now?


#4

he had surgery jan.2011 and so far all his scans were good. In addition to the surgery he had 35 trteatments of radiation . No Chemo. He feels good and is working full time. he does get tired a little more often then he used to.


#5

I also had surgery(o5-25-2010) but before that they shrunk the tumor (10x15 cm) a tiny little bit with 5 rounds of chemo.

With the surery they also took out a piece of mij neckmuscle, adamsapple, thyroid and almoost all of my salivagland.

After three weeks of recovery i recieved 30 rounds of radiationtherapy.

My scans now are clean, i go every 4 months to review.

Thx for your comment.


#6

My son's tumor was less than 5cm. Where do you go for treatment? They remove alot from your neck. where on your neck was the tumor? They remove some muscle, such that his shoulder has a tendence to drpe


#7

I had tumor around my spine...not my neck. -- It has been a long journey for me. I would strongly suggest you get to a center of excellence that has seen this cancer a lot. Dana Farber, MD Anderson, Sloan Kettering -- Good Luck... many prayers! Nik


#8

My tumor grew from the vertebra on my right side, it was growing all the way from my jaw to my salivagland.

My mum saw one day that my adamsapple was pushed to the left and that my neck/throat looked swollen so she send me to the docter. At first they thought it was Hotchkins and i was send to a cancercentre in the north of Holland ( Groningen ). I stayed there for two weeks in research.... and they found out that is was a sarcoma. Luckely there was a sarcoma team in Groningen so i was in good hands for the treatment. They follewed the international findings about SS witch you can find at www. skion.nl.

I hope you can understand my poor english writing... thanks for your reactions and i will pray for you all to.


#9

You speak English better than I speak Dutch. I see that you went through quite an ordeal as most SS patients. My son does not talk about his SS. I think he lives in fear of it's return.


#10

Hang in there Max! Not neck but I’ve had a large part of the back of my spine cut off due to my tumour. It’s very scary when they are working in delicate places like that. It completely freaks your out. I like your football photo, you look very fit!


#11

Would you like to learn how to speak Dutch ? ;-)

jaysdad said:

You speak English better than I speak Dutch. I see that you went through quite an ordeal as most SS patients. My son does not talk about his SS. I think he lives in fear of it's return.


#12

I did, the tumor was still inside.....at the time this picture was taken.

Gary T said:

Hang in there Max! Not neck but I've had a large part of the back of my spine cut off due to my tumour. It's very scary when they are working in delicate places like that. It completely freaks your out. I like your football photo, you look very fit!
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#13

Living in fear weakens your immunesystem , i am still young and i was 15 years at the time we found out about the SS......

I don't think about it a lot and if i get scared i turn to my mother, she knows what to do.

Max said:

Would you like to learn how to speak Dutch ? ;-)

jaysdad said:

You speak English better than I speak Dutch. I see that you went through quite an ordeal as most SS patients. My son does not talk about his SS. I think he lives in fear of it's return.


#14

..I had ss in my throat,right parapharnengeal space in 1995....6cm..grim diagnosis.so rare all they could say is IT IS SO RARE WE DONT KNOW?not enough trial n error with chemo and treatments to know what works.well im still here .and you can be cured also.i had radiation...surgery first...still have affter affects. sore tongue everyday...head aches ,lack os saliva and such...but being here is great.


#15

Thats great, I'm glad to hear you have survived for so long. I hope that for everyone. No chemo?


#16

I was so scared when all they could say was it was rare in neck,,told me not many of us here....but im living proof you can survive just like me....if you have any questions ,please ask.....marie


#17

yes,no chemo..my docs at the time 1995,said they did not have enough trial and error with chemo on synovials in neck n head....maybe now they do?i was glad but also scared i wouldd not get fully cured....


#18

Max ,Dont feel alone. I am here.I had the same thing in the same area.really wierd you showed up..I was online seeing if they have new cures...treatments and found this site. I dont think it was a coencidense...same scar...same side of neck...I live with loss of saliva ,my tongue is sore 16 yrs later,But nothing serious...Life is good.My doctor was dr,richard hayden.look him up online,he is now in scottsdale arizona. he was at unn of penn, in philladelphia.His skills saved my life.Please let me know if you got this message,I know how you are feeling and taling to me will give you the faith and hope you need,


#19

I would like to talk to you .You are the first prson I found in almost 17 years with the same cancer in the same spot...

I used to feel like I was the only one on the planet by the way my docs talked...

.


#20

I was 33 also...now 50..wahooooooo