SS in children not located in the joints


I am trying to locate anyone who has similar circumstances as my daughter. My daughter is 10 and her cancer is about 6 inches and is intertwined in her small intestine and attached to her abdomen wall. I am not finding anyone with similar circumstances and no specific research with the same or similar diagnosis. Is anyone else in this group in my boat? I would love to hear from you!


Hi, iam sorry to hear that i hope she gets better and gets rid of the cancer. What did the doctors say?

I heard that eliminating sugar from the diet helps as cancer cells live on sugar. There is a diet called ketogenic diet please check it out.


My son's cancer was in his lower back -- in the muscle tissue. Can I help or answer any questions?


I could find little information in pediatric truncial SS. Will was 11 when the cancer was discovered, It was biphasic and less than 5 cm. The surgeon initially thought it was a hernia that she was removing, so everyone was surprised when it was cancer. Will had a wide resection and his lower back muscle was removed (10 cm circle, 4 cm deep). He was a gymnast and we were not sure what the long-term effects would be. Within 5 months, Will was back in the gym and did 4 handsprings in a row the first night. He works with a trainer to strengthen his core because of the damage from the surgery and does gymnastics 3 to 4 days a week. Your daughter may be similar and the recovery difficult. But seeing how well Will has handled everything has kept us encouraged. Keeping him busy and active has helped him still feel like a normal kid.

The statistics with truncial SS are scary so we try not to dwell on it. There have been so many ups and downs with lung nodules. We have scans every 3 months, including this week. These scans were great and showed no new nodules and no growth of existing ones. There is so little info out there about truncial, and I never remember reading about a case like your daughter's. I hope this helps. Please feel free to ask any questions. Many blessings.