Hi, I'm new to the group so here goes. I was diagnosed with Retroperitoneal Liposarcoma in December 2014. The beast as I call it (due to its size) was removed with surgery. I lost my left kidney and part of my bowel. It then decided to rear its ugly head again in July 2018 and was once again removed with surgery along with a bit more bowel and small piece of pancreas. Unfortunately it's back! I have regular 6 monthly scans and it's double in size from March to now. I'm under The Royal Marsden and my surgeon has now said that surgery is no longer an option due it continually growing on the bowel. So the plan now is they are putting me on a 5 cycle trial drug. The current treatment for my cancer is Doxorubicin but the beast may not respond to this, which is why they want to do the trial first. My first screening appointment to see if I'm compatible is Monday 10th. I'm still trying to process it all and get my head around the fact that at the moment I feel well and their going to put drugs in me that will make me ill. I know its got to be done but it still feels scary! So that's my story so far, sorry its a bit long winded. Just wondered if anyone has had similar experiences.
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Hi and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I can totally empathise with your feeling of having drugs to treat your cancer when you feel well. I started chemotherapy after surgery for breast cancer 3 months ago. The cancer has been removed but they felt I'd benefit from chemo to try to prevent possible recurrence. Like you I didn't feel ill, so it took a while to get my head around the idea of having chemo. Thankfully, touch wood, I've tolerated it really well and it hasn't made me feel unwell.
As the online community is divided up into different support groups, I'm going to recommend that you join the soft tissue sarcoma group which is a great place to ask questions, share experiences and get support from others who have retroperitoneal liposarcoma.
To join, just click on the link I've provided which will take you directly to the group. You can then join and start a new post in the same way as you did here and join in with exiting conversations by clicking on 'reply.
It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on 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.
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"Never regret a day in your life, good days give you happiness, bad days give you experience"
