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The mainstay of treatment for IVL is surgery to remove the tumor and its spread throughout the body. The use of anti-estrogen therapy, such as tamoxifen, has also been suggested. Surgery requires the complete removal of the tumor, since incomplete removal may result in a recurrence and hence further surgery or even death. Many affected individuals undergo a hysterectomy; bilateral oophorectomy is also suggested because these tumors are estrogen dependent. Part of a tumor left inside the pelvic veins at the time of hysterectomy can extend towards the right side of the heart, leading to obstruction and other adverse events later in life. The median time between hysterectomy to the diagnosis of IVL with cardiac involvement is 4 years. Once there is cardiac involvement, a patient may require open-heart surgery to remove the IVL from the affected areas.
Last updated: 11/1/2013
- Wu CK et al.. Intravenous leiomyomatosis with intracardiac extension. Internal Medicine. 2009; 48:997-1001. https://www.jstage.jst.go.jp/article/internalmedicine/48/12/48_12_997/_article. Accessed 11/1/2013.
- Liu B, Liu C, Guan H, Li Y, Song X, Shen K, Miao Q. leiomyomatosis with inferior vena cava and heart extension. J Vasc Surg. 2009; 50(4):897-902. http://www.ncbi.nlm.nih.gov/pubmed/19560308. Accessed 11/1/2013.
- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.
- ClinicalTrials.gov lists trials that are studying or have studied Intravenous leiomyomatosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.