I am interested in your mentioning 2nd opinion to me. When I eas getting ready to start chemo for my leiomyosarcoma last August I called a number for Mayo and thry referred me to the tumor biard who reviewed my electronic records and said that what the specialist at Froedert and my local incologist were recomending were different but both appropriate. They told me I could go there for treatment but it is 3 1/2 hours one way . The receptionist told me they did not have any clinics closer to me so I decided to stay with local treatments as I had been goi g through testing for 5 months and the local oncologist was anxious for me to get started. The lical also gave me the name of a specialist at Mayo he was familiar with so I am still not sure why he sent me to Froedert instead. Both Froedert and Mayo are listed on the Leiomyosarcoma website as approved specialists. I was surprised that UW Carbone Vancer center at Madison Wisvonsin which is only 2 hours from me did not have a sarcoma specialist listed. So my question is might I get better information from the link you shared? And woukd they actually see me for a second opinion since I have already begun treatment elsewhere? I am palliative not curable. Chemo only. Thank you for your help.

Hi Colleen,

Mine came from the spine, which they believe it is the primary location, but they are not a 100% at this time. All my full body scans has not shone any metastasis thank GOD! I sort out a second opinion at the Moffitt Cancer Institute because the Mayo Clinic doesn't take my health insurance plan and the doctor agreed that MAI chemotherapy will follow my radiation treatments. I am also getting genetically tested to determine if their are any genetic clues that would help with my future treatment plan.

Hello again Colleen,

In addition, my leiomyosarcoma is appearing in a rare location which is the spine and it is also rare that it has bone involvement since it is a soft tissue cancer. The oncologist at the Moffitt Cancer Institute said she has only seen 4-5 other cases like mine. Many others had it in their soft tissues. I have to get proton radiation treatments rather than the conventional photon type due to proximity of the spine and esophagus. My chemotherapy will be impatient for 5 days, then two weeks off, then impatient for 5 days again, etc. This process will continue for at least 3 months or about 3 rounds, then they will decide if I am in remission. My ultimate goal is that it never returns.