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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 5 days ago | Replies (845)

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@gtreece

My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage 1B tumor removed from uterus. I also had a complete hysterectomy. The tumor was estrogen sensitive so I was placed on Letrozole. The side effects have been challenging. Two and a half years in a mass was found through a CT scan. Pet scan reveled no spread. Tumor was removed laproscopically. Tumor was located on right side attached to lower branch of aorta. Genetic study to be conducted. So far I am told only treatment is to remove tumors as they appear. Not sure what questions to ask the medical professionals or how to advocate for myself effectively. I read conflicting information with what my oncologist is telling me, "that radiation and chemo are not effective for this type of cancer" but see trials with chemicals and radiation therapy. Would like to know and understand more about treatments why they work or why not. Also want to know if continued use of Letrozole will be effective in some way. Appreciate any information/advice you may have about this issue.

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Replies to "My name is Gloria. I am diagnosed with Uterine leiomyosarcoma. In 2020 I had a stage..."

Hello. I have the uterine leiomyosarcoma as well. Full hysterectomy in 2021. In 2022 removed a tutumor from my lung. I have been told the same information. I have follow up ct scans every 3 months and hope each time that I have clear scans. With all my research and w my drs I find the the same information you have. That I need to remove the tumors are they come up. If I learn anything new I'll post to you.

started new chemo yesterday, erubilin