Hi, there. I'm new to the group. Our son was diagnosed with SS in 2011 when he was 7. Docs thought it was a benign but painful lump (can't remember if it was 10 or 15 mm long and not very thick) in his upper left back of his arm, above his elbow. We asked them to remove it. It took a total of 3 surgeries to have clear margins. During scans they also spotted a tiny nodule in his lung, so the third arm surgery was combined with lung to remove that. That nodule was totally different, and in the end they decided it was a benign thing (at first they thought it was pulmonary carcinoma, which would have been completely unbelievable, as there are no risk factors for him for that). Talk about a roller coaster. About one year later, his SS recurred in his arm, and a 5 mm tumor was just removed a couple weeks ago. Now they are discussing treatment options. Our doctors seemed to think that chemo and rad were not indicated last time, but now they are exploring all options, including discussing amputation. Lots of second opinions are being sought from all over. Thank goodness they are taking care of this for me. What a great team we've had at Kaiser here in Sacramento, CA! His first ever PET scan is tomorrow (CT, MRI, and bone scans are all he's done in the past).
So, I have a few questions for the group...
1) How many young children do we have out there in the group? I'd love to hear your stories.
2) Did any of you, regardless of age, have small tumors like Tristan's and if so, what has been the treatment plan? Have they discussed amputation, too? It would be just about his whole arm, I think. Luckily he is right handed, but that's a pretty scary thing to contemplate for an 8 year old. So is the possibility of mets, of course.
3) And this one is just a curiosity thing for me, sort of an informal survey...anyone with SS out there also have cervical ribs? Our son has two fully formed cervical ribs (it's a genetic thing). I was reading an article which was proposing a link between early childhood cancers and cervical ribs and the Hox genes which inhibit that abnormality. So I was just curious on that one, because we have no family history of childhood cancer, and really very little cancer in our extended family at all.
Thanks for your input! I've been compiling data for our oncology team, as I know they don't have time to do this kind of research. I'd like to be as fully informed as possible and even have some input into the treatment plan besides just being a parent. It's all I can do, besides continuing to be positive! :-)