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Newbie!


#1

Hello,

Just want to introduce myself my name is Cathy I'm 38 years old from Brampton, Ontario Canada (Toronto).

I was just diagnosed with Synovial Sarcoma in March. It took at least 2 years i was diagnosed with inflammation, sensitive nerves, tendinitis, carpel tunnel syndrome. every time I went to the doctors they though i was exaggerating, finally when to emergency and got referred to the orthopedic surgeon.

MRI concluded the sarcoma was wrapped around my radial nerve.

I was diagnosed after my orthopedic surgeon referred me to a plastic surgeon who removed the tumor. Her belief was that no was it sarcoma as the orthopedic surgeon had sugged but rather a sharwmanoma (spelling).

She removed the entire tumor 4.5cm, it was in recovery that I could tell she was concerned that it wasn't what she thought it was based on texture/form.

I was then referred to a oncologist who only deals with sarcomas. I have since had a scan on lungs which shows negative for METS.

My treatment plan consists of 5 weeks straight of radiation treatment, and the then followed up by surgery. although the tumor was removed he is certain he needs to "clean-up" the tissue bone around the tumor.

He seems pretty positive that this is all that is required, has anyone else experienced this? Seems pretty simple and will be able to move on with life in a few month.

Just looking for any advice reassurance.

I


#2

The tumor was less than 5cm and you don't have any evidence of mets in the lungs. These are very positive news, linked to better prognostic. You went through a "Oops surgery" which is unfortunate but not uncommon. It is unfortunate because an unprepared surgeon usually can't get clear margins, which is another important factor linked to better prognostic. Radiation and an additional surgery make sense as they will help clearing the margins...


#3

This is almost identical to my story other than mine was in the knee. Many years of misdiagnosis. Mine too was wrapped on a nerve causing extreme pain to the touch. Mine was 3 cm and the treatment was almost identical to yours. I had a second surgery that included skin grafts and other things to clean up the area. Then radiation. I have been cancer free for 19 years. Best of luck. Survival is possible.


#4

Hi Newbie,
This is very similar to my sons diagnosis. 2 years and 7 doctors/diagnosis later, he had an “oops” surgery on his left ankle. His was 2cm. His second surgery consisted of a total resection with removal of his nerve, tendon, and much surrounding tissue. He then had tendon reconstruction from a new tendon and a muscle flap added from his thigh muscle. Whew! Doctors were able to get negative margins and it had not moved anywhere else so no chemo or radiation. For this kind of cancer hardly anyone thinks to go to an oncologist first. Glad you had positive feedback concerning the future.


#5

Hi! Sounds likes its been a struggle but hopefully you are with the right people now and everything will be taken care of without any mets occurring at all! God Bless you. It truly seems you could be one of the lucky ones! Debbie.


#6

You have a lot of things in your favor like Elodie said. Happy that you're on the path to cleaning things up. Stay strong and you are young & able to put up a great fight! Good luck to you and always try to keep the things that make you happy very present in your life. During your tough times, rely on friends, family and remain positive. Keeping you in prayer that your medical staff make good decisions for you. Always question and be your own health advocate and educate yourself. xoxo


#7

Mine is also the same type , I had a wide excision surgery and then radiation for 6 weeks , now finished one followup daiting for the second follow up in june , no signs of cancer in my body now

thank God for this


#8

I had a very similar story. My tumor was in my ankle. Took almost 5 years to discover it. Thankfully by then it had only grown to almost 1cm since I felt it years prior. I was advised to do radiation but I was also told that I may not be able to walk after all the damage it would cause. I rejected it and haven't undergone anything more. I will be getting scanned again this month.

Looking forward to keeping up with your story. Keep us posted!