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Synovial Sarcoma - Online Support Group

Diagnos with Synovial Sarcoma


#1

My daughter, 38 yrs old was recently told the tumor they removed from her nerve is Synovial Sarcoma. On Monday she will have her pet scan, ct scan, bone scan, and chest xrays done. We have been told they need to reopen her elbow area, cut away all bad tissue, and remove her never, leaving her right hand with only her thumb and index finger with movement. They have told us she will received aggressive radiation and chemo for 8 months. As her Mom, I am worried, which is normal, are brains are trying to process all this, what am I to do? I am her biggest support, what are the changes she will go thru.


#2

The treatment is rough and your daughter can definitely benefit from your support. She may need help for cooking, cleaning, shopping and may need a driver to take her to the hospital. The diagnosis can cause a lot of anxiety and even anger. Use patience...


#3

I have all stages, anxiety, anger, positivity and patience. I’ll know more tomorrow. Saying lots of prayers her her recovery. Thank you so much for listening.


#4

Laura you will make it through. Just take one day at a time and I would get a second opinion about amputating the whole lower arm if not all. Her prognosis will be better and they have amazing prosthesis now. I don’t recommend chemo it really doesn’t work on synovial. Seek another opinion. Prayers for wisdom and my Gods love and strength surround you and guide you. Don’t feel pressured or overwhelmed and seek another opinion
synovial mom


#5

They are only removing her nerve in her arm. Thank you for you thoughts and prayers.


#6

Make sure she is being treated at a sarcoma center if at all possible.


#7

She is at the Smilow Cancer Center @Yale-New Haen in Ct.


#8

It's not really considered a sarcoma center. Is her oncologist at least a sarcoma specialist? She may want to get a second opinion. Dana Farber in Boston and Memorial Sloan Kettering Cancer Center in New York are probably the closest...

Laura said:

She is at the Smilow Cancer Center @Yale-New Haen in Ct.

#9

Yes hi is. Dr. lindskog. Bone scan yesterday was clear , chest scan showed 4 small shadows, he was not too concerned just now. She will be starting 5straight weeks of radiation to rot elbow first. Looking at saving the nerve right now.




Elodie Espesset said:

It’s not really considered a sarcoma center. Is her oncologist at least a sarcoma specialist? She may want to get a second opinion. Dana Farber in Boston and Memorial Sloan Kettering Cancer Center in New York are probably the closest…

Laura said:

She is at the Smilow Cancer Center @Yale-New Haen in Ct.

#10

Good luck to your daughter! I hope radiation helps...