Well diff retroperitoneal liposarcoma

Hi Sparky2 and welcome to our community.

You are right to note there has not been much traffic on this form of sarcoma, but then all sarcomas count as "rare" and then specific types become even more so. If you use the search button at the top of the page I did find a handful of posts on liposarcomas that might be useful. 

My wife has Leiomyosarcoma so rather different but in her case the second round chemotherapy rendered it stable - no evidence of progression now in about 10 years so living with rather than dying from cancer.

It might help  to look at this page from sarcoma uk as it might give some more direction.

<<hugs>>

Steve

Thank you Steve, so helpful. Your Wife has done amazingly well! What a fighter! Best of luck to you both x

Sparky

Hi sparky2,

I also had a massive retroperitoneal sarcoma. I am  nearly three years down the line since the removal of my left kidney and part of my diaphragm. I’m feeling very lucky so far but constantly wondering when my luck will run out. I have not spoken to anyone with sarcoma never mind retroperitoneal sarcoma. I hope you are doing well and staying positive. 

millymollymandy

Hi Millomollymandy!

I'm sorry you've been through such a tough time, it's horrid having a rare cancer isn't it? It often feels like there's no one else out there who understands. I had several scans after my surgery. I felt as though my pain was increasing again and gradually upped my dose of Pregabalin until above the NICE guidelines. I was pretty sure by the next scan that it would show a recurrence, which it did. So, two years ago tomorrow, my surgeon opened me up again, with a bowel surgeon standing by, in order to remove one/possibly 2 areas of recurrence plus possibly give me a stoma. Unfortunately there were 3 areas and all deemed inoperable. They decided to give me quality of life with a hopefully slow growing sarcoma and no stoma! So, here I am, untreatable and incurable with a slow growing set of tumours ( max growth this year was 6mm) and happy to say living life to the full, relatively pain free, with very stable and slow growth. I have relaxed so much since my last scan and feel so well! So please try not to worry too much, we are the most scanned people in society! I hope sincerely you will be one of the lucky ones with no recurrence ever! Big hug to you xxxxx

Thanks for getting back to me Sparky2

,Its a very difficult path your on now but I’m glad to hear you have a positive attitude, like me!  I hope you continue being relaxed and pain free for a long time. X

There are times I think  about it coming back but mostly I just toddle on with my life not giving  it much thought. On the very rare days I do have a niggle about a recurrence I remind myself of how lucky I am so far. Sometimes I think I should be worried, I do find it hard to think about myself most of the time though. 
I am on yearly scans now and relatively pain free so for now it’s all looking good. It is nice though to have someone to talk to that has been through the same experience. I’m in the west of Scotland and under the care of the Glasgow Royal hospital. They have been really good and always reassuring me that they’ll do their best for me. Sending you all my best wishes for a lovely Easter , Mandy xxxx

It sounds like you have a great team looking after you! Me too! It made me chuckle when you said you live in Glasgow though, we couldnt be much further away from each other. I'm in Cornwall but treated in Plymouth! I dont suppose we'll be meeting up for a coffee anytime soon!! 

Is your pain because of your kidney surgery? I can't imagine what that must feel like. Mine is all about the femoral nerve and quiteniggly at times but I generally manage to ignore it. I have done a lot of mindfulness and still enjoy doing meditations too. I am pretty active and try to keep as fit as I can for an old girl of 54! What helps you to cope and stay positive? I think physical activity is the best thing for my worry and tendency to over think things.

Any way, hope you had a lovely Easter!

Sparky xx

Hi Sparky,

hope you are keeping well  and enjoying spring! I’ve had a lovely relaxing Easter break as I look after my grandkids during school times for my daughter . My 11 year old granddaughter has an illness called PANDA’s which is a relatively unheard of condition that is absolutely debilitating for her. She hasn’t been to school since last June so as you can imagine It takes most of my time and energy looking after her.  I don’t have much time to  worry about my self. 
I too have tried some meditation and  mindfulness and just fall asleep at any chance I get lol. keeping busy is my answer to worry and pain.! I also have started painting ( slapping paint on a canvas) and I lose whole afternoons, but I love it.

It’s a shame we’re so far apart and can’t do a wee cuppa but a wee chat on here can’t go wrong.x                      Keep well and chuckling till we speak again.

Mandy xx