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Leiomyosarcoma from thoracic spine with bone involvement

Sarcoma | Last Active: Apr 10 8:24am | Replies (11)

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@elcee

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.

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Replies to "I am interested in your mentioning 2nd opinion to me. When I eas getting ready to..."

@elcee, thanks for jumping into the discussion. I tagged you to introduce you to new member @michael911, who has a similar diagnosis as yours and could use some support.

I mentioned Mayo Clinic to Michael in case he was seeking care with a sarcoma specialist. I apologize for the confusion that you thought the link was intended for you. It sounds like you have already contacted Mayo Clinic and that upon review by Mayo's tumor board they reassured you that were receiving excellent care at Froedert and with your local oncologist. Mayo doesn't want you to incur the cost or inconvenience of travel if you are receiving excellent care closer to home.

How are you doing on chemotherapy? What chemo protocol are you on?