I am having a really hard time navigating this site but I had started a discussion earlier asking if anyone here has experience with SS attached to or intertwined with any vital organs? I am having a very difficult time finding any information in this regard. You see, my daughter has SS and it’s intertwined in her intestine and I’m searching for anyone who has a similar experience. Could someone also tell me how to respond to others, this site is not very user friendly. Thank you! Brenda
Hi, Brenda, I think you may have had no responses because it is possible your daughter may be the only one on the network with an intrabdomenal ss. I could find only one article about a patient like your daughter, and perhaps you have already found it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3041044/
I would encourage you to keep posting about your daughter's experience here, because there may be others in the future who are in your situation and also looking for someone with the same experience. Is she scheduled for surgery?
Also, if you message me or Elodie with questions about the site, we can help. To message us, click our pictures and it will take you to our pages. Then click "Send Message" under the picture, and you can write to us.
There are various ways you can communicate with people here. You can add a comment on a member's wall. You can send them a message privately but you have to befriend the member first. For this, you click "Add as Friend" under their name on their wall. Keep in mind that some members may not reply because they may have already passed. To reply to a comment on your wall ("My page"), just click "comment back", it will send you to the member's wall where you can enter your comment in the box and click "Add Comment". To reply to me in this discussion, enter a comment in the open box and click "Add Reply".
I'm 27 years old. I started having pain on my left side and eventually got my left kidney removed along with a tumour attached to it. At the time we thought it was benign, but the laboratory report confirmed it was SS. I received radiotherapy in the area and the doctors mistakenly thought that was enough. Sure enough, about a year later the sarcoma had metastasized and I had to undergo surgery again. I lost my stomach, spleen and part of the pancreas. I had 6 cycles of chemo (Ifos/Dox) and lost a bunch of weight on account of both not having a complete digestive system and the chemo. It's been three months since I finished treatment and I've been better. I've gained some weight back and my checkups have come clean. Feel free to ask any questions you might have, and best of luck to you and your daughter.
Julian, thank you so much for sharing your story. When I found out where my daughter had her SS I wondered why they wouldn’t just remove that part of her intestines, plenty of people have sections of intestine removed? I’m still unclear but she has been on chemo since April. On the 25th they will do a CT scan to see if the tumor has shrank and if they can do surgery. Best wishes to you, I will certainly add you to my prayers. Brenda
Brenda, chemo is more commonly given to children that to adult. The reason is historic. In studies, synovial sarcoma pediatric patients have been clumped together with other sarcoma pediatric patients, mainly rhabdomyosarcoma and osteosarcoma while adult patients have been clumped with adult sarcoma, mainly liposarcoma and leiomyosarcoma. And pediatric patients have been found to be more responsive to chemo. But that may just be due to the different mix of diseases.
I do hope they give the green light to do surgery. Good luck!
Thank you Elodie
Brenda, where do you live? If you are able to get to ny, run to dr Gerald Rosen at NYU. He is a seasoned veteran. He deals exclusively in sarcomas and he has a firm grasp on the way this disease works. (As much as anyone can) He actually created a lot of the protocols that are currently followed in sarcoma treatment. I Highly recommend him and suggest getting an appointment with him immediately.
Only good things, Sage