Endometriosis is considered a benign disease, even though it can travel to lymph nodes and other organs in your body, just like cancer. Endometriosis associated ovarian cancer is rare but it exists. There is now molecular evidence that this happens in some women with endo because of molecular genomic changes in common between cancer and endometriosis. These changes are not present in all women with endo, but if present it is more ominous. While these changes can be tested for, it is not for everyone and is not completely accurate. However, if you have endo or are suspected to have endo with a supposed endometrioma on ultrasound, and especially if you are in the age range of 35 to 55 years, you should consider an opinion with a gynecologic oncologist. If you have a family history of ovarian cancer or a personal history of other cancers, you should consider a consultation like this mandatory because it can mean the difference between life and death.
There is published research evidence that some ovarian cancer (OC) types, mainly ovarian clear cell carcinoma (OCCC) and endometrioid cancer (EnOC), may result or arise from endometriosis. The most common genomic changes in these cancers are mutations in the AT-rich interacting domain, which contains the protein 1A (ARID1A) gene, a subunit of the SWI / SNF chromatin remodeling complex, and changes in the phosphatidylinositol-3 Kinase (PI3K) / AKT / mTOR signaling pathway that often occurs simultaneously. In ARID1A-deficient cancers, preclinical experimental data suggest various targeted mechanisms, including epigenetic regulation, cell cycle, genomic instability, PI3K / AKT / mTOR pathway, inflammatory pathways, immunomodulation, or metabolic changes as possible precise oncological approaches.
If there is suspicion that your supposedly benign endometrioma might be something worse, based on ultrasound or MRI and your family history, there are high tech tests that can be run to help determine the best treatment. This includes something called tumor markers (not just CA125) and circulating tumor DNA (ctDNA) analysis. These types of tests are NOT necessary for the vast majority of women with endo and ovarian cysts (possible endometrioma) and the risk overall is very low that you have associated cancer.
The risk for a woman with endometriosis to develop ovarian cancer is up to 50% higher than in the general population, although that risk overall is still low in the 2% range. This is especially true regarding the risk for developing the aggressive clear cell or endometrioid type, where the risk is tripled or doubled. Considering that there are millions of women with endometriosis, even a small percentage of that means thousands can also have an associated cancer.
If surgery is performed by a surgeon who is not aware of these possibilities there is a high risk of spilling cancer cells which, if you end up having endometriosis-associated cancer, can increase the possibility of needing chemotherapy.
At the Gynecologic Oncology Institute, we specialize in high-risk and advanced endometriosis as well as ovarian cancer. Dr. Steven Vasilev MD is a gynecologic oncologist and a renowned expert in minimally invasive robotic surgery, even for advanced cases. There are many other endometriosis excision surgeons that are very good out there, but if any of the above fits, especially regarding family history and advancing age, it is prudent to consider an opinion from a gynecologic oncologist.
The link below is to a very comprehensive review of the connection between endometriosis and ovarian cancer.