Hi, I was diagnosed last May with a leiomyosarcoma in the inferior Vena Cava. I know it is very very rare. I would love to speak to someone with the same condition. I feel so very different from everyone. anIs thereyone out there who has the same or similar diagnosis?
Although I do not have a leiomyosarcoma I noticed that your post hadn't had any replies.
If you type 'leiomyosarcoma' into the search bar in this group you will come across a number of posts where this cancer is discussed. I don't know if the people concerned had it in exactly the same place as you as I didn't read all the posts.
I'm also tagging src60 as he's the Community Champion for this group and might know of other people here who have exactly the same thing as you.
When you have a minute, it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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my wife's LMS started they think when a fibroid turned cancer but they reckon when she had an episode the cancer showered down IVC and now lives in her lungs.
She was treated with Doxyrubicin though that was something of an adventutre and later with Gemcatabine that managed to make her cancer stable, living with cancer now for over 6 years.
Where are you being treated? We are lucky to live near Oxford one of the specialist sarcoma centres.
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