Husband has a large cell sacral tumor and needs a specialist but this type is rare.?

Question

Few patients live past early 20's, and my husband is 22 (diagnosed at 20), so not much is known about his type. He has a had surgery to remove it, then radiation. i grew back, ate away his spine and pelvis, so now they cant remove it again. he has been getting injections to help shrink it with little progress. we think part of the problem is that he hasn't had insurnace, but he gets medicare next month. we just need to find someone with some new options.

Answer 1

I am not familiar with this type of tumor since it can be either considered benign or malignant. Which type of doctor has treated your husband? He may benefit by going to a Sarcoma Center and being treated by a sarcoma specialist. You can find a list here:

Sarcoma Alliance: Sarcoma Centers
http://www.sarcomaalliance.com/master.html?SubCategoryId=2

You can research the disease at Pubmed
http://www.ncbi.nlm.nih.gov/sites/entrez

Giant Cell Tumor of the Sacrum
http://www.medscape.com/viewarticle/461105_2

CTOS: Giant cell tumor (GCT) of the pelvis and sacrum
http://www.ctos.org/meeting/2000/posters/poster10.html

Good luck.

Answer 2

Have you checked into places like the Mayo Clinic, MD Anderson, Siteman Cancer Center, Duke University? Has he tried any clinical trials?

Answer 3

Check out the National Cancer Institute's website. Call them also and see if they have any new treatments available or if they can link your husband with clinical trials.

Answer 4

Have a look here - it's a different disease but with a lot of sacral sarcoma patients:

http://groups.msn.com/chordoma/_whatsnew.msnw

Use the "Join" to make contact and you can be referred to other resources.