Leiomyosarcoma of the IVC

Hi

Welcome to our community though sorry to hear about what you have been going through. Janice's leiomyosarcoma originated they think in the womb but then went through the IVC and lodged in her lungs. When she was first diagnosed they initially did watch and wait but later moved to try some chemotherapy - it was perhaps a bit too successful in that it caused a lung to collapse. A bit of work and they managed to fix that problem and then tried a different chemotherapy and that ended up putting her cancer to sleep - and that is they way it has been for the last 10 years.

It took a lot of work for us to learn to live with cancer but as Janice says now - it is not bothering me and I am not bothering it. Good news that you are being seen at the Royal Marsden as they are one of the centres of excelence for sarcoma.

One of the perhaps interesting side effects is whenever she sees a locum doctor and talks about the cancer they end up looking it up on wikipedia.

<<hugs>>

Steve

Hello,

My mum has just been diagnosed with this. She had the tumour removed and it was successfully removed. We are now waiting for her next scan to make sure all has been removed and if any is left. It was decided due to the location that preventative radiotherapy was too risky. At the time of her operation it was not believed to be malignant tumour so unfortunately they didn't remove alot more of the healthier tissue around her tumour. She has been told she has a 50% it can reoccurrence. 

I have been diagnosed with Leimyosarcoma of the IVC. I am still awaiting a treatment plan as it’s in a very difficult position. I was told the Timor was there on the 14th of August and am struggling with the time it’s taking to start treatment. I know they will have to remove one of my kidneys but still don’t have definite plans for surgery or treatment. Knowing how rare it is to have in the IVC I’m glad to hear your mum came through the operation well!  X