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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: Nov 8 5:59pm | Replies (840)
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@luna6922

Hello. I have been diagnosed with leiomyosarcoma last summer 2021 at Northwestern Memorial in Chicago.
I had a total hysterectomy. I am w the University of MN now after dealing w a mesothelioma expert while taking care of my Dad. Now last month found a spot in my lung. I'm currently being treated at the University of Minnesota but am not confident. I guess just confused. I want a second opinion. Do I need to ask the dr to refer me to Mayo and if so is there a dr that specializes in leiomyosarcoma? You all sound so brave. My brother says there is a treatment at mayo that called high intensity focused ultrasound (HIFU) that works on some cancers. Would this work on mine? I appreciate your time. Christine

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Replies to "Hello. I have been diagnosed with leiomyosarcoma last summer 2021 at Northwestern Memorial in Chicago. I..."
Colleen Young, Connect Director | @colleenyoung | Sep 7, 2022

Welcome, Christine. You've got a lot going on with both your leiomyosarcoma and taking care of your dad. I'm tagging fellow members @kathythornjohnson @allsmiles @ventibug and @rred who have experience with leiomyosarcoma and will hopefully join the discussion.

But first to your questions. High intensity focused ultrasound (HIFU) is most commonly used in prostate cancer patients. HIFU is a cancer treatment that uses high-frequency sound waves. You have HIFU from a machine. The machine gives off the sound waves which deliver a strong beam to a specific part of a cancer. This heats and destroys the cancer cells. Clinical trials may be available for some soft tissue sarcomas.

To request a second opinion at Mayo Clinic, you can ask your doctor to submit a physician referral. But you can also self refer. It's easy to get started. By filling out the online form, you will be called back within 3-5 business days to arrange a time to talk with a scheduler. Go to this page to learn more and to see the online form: http://mayocl.in/1mtmR63

What treatments have you had since your diagnosis? Have you had a biopsy of the spot on the lung?

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