Hi everyone, I was wondering if anyone did chemo after surgery for retroperitoneal sarcoma. My sister had a 9cm mass removed in June and on July 5th was told it was aggressive so therefore they would throw everything at it. Since then they have changed their minds a few times with the chemo doc saying no to chemo until she asked him had he looked at histology report. Then he said six sessions of chemo every six weeks. She's rather nervous as you can imagine. (also mam died of breast cancer so she's very aware of how tough chemo etc can be.)
Im trying to help her by finding people who had chemo after. The surgery was a success - she was told by one radiologist that she is 99% cured.
The hystology report mentioned high grade leiomyosarcoma with spread to one out of three aortic nodes. It had infiltrated her Interior Vena Cava.
Thanks in advance
Best wishes
Hi
I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' your post back to the top of the discussion list where it'll be more easily seen.
I've found these previous posts for you which mention retroperitoneal sarcoma and you could have a look through them to see if people had chemo, contacting those who you feel might be able to help you further.
While you're waiting for replies it would be great if you could pop something about your sister's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi
No experience with retroperitoneal sarcoma but my wife does have leiomyosarcoma - the diagnosis of which was an adventure in it's own right. Janice has secondaries scattered through both lungs. The oncologist told us chemo is often not very effective against sarcoma but with nothing left in the arsenal we decided to give it a try.
The first chemo was if anything a little bit too effective - some of the cancer cells formed the wall of the lung and killing them led to a collapsed lung - still that has been fixed. They then tried a gentler kind of chemo and it shrunk the tumours some but it also appears to have put them to sleep, her cancer is now described as stable and for us that is the new gold standard. Best of all we have found our way to living with cancer because we have been doing that now for six years.
As human beings we have a wonderful sense of self preservation, it is so easy to read 99% cured as 1% dead. It took me a while to learn to live with cancer, appreciate what I have rather than what we cannot have but it can be really hard work. Sharing on here can be very helpful because we understand there are good days and bad days.
<<hugs>>
Steve
