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

Hi . I hope you don't mind me posting . I'm just so impressed with your positivity as I am really struggling emotionally right down. I have a small soft tissue sarcoma at the top of my stomach and I've been told I need surgery to remove my stomach. Problem being they've picked up a problem with one of my heart valves. I'm told I need to have surgery to replace the heart valve before they can operate on my stomach . Just so very frightened and in a really bad place emotionally . I send best wishes to everyone and hope for the very best for you all. Please forgive if I've been inappropriate  in this reply . Just seeking any ray of hope there might be out there . 

Hi there Maureen!

Welcome to our chat! I'm sorry this has happened to you but I'm sure you can cope. It's good that they have found the heart valve problem, even though you are left worrying about two problems. I think the best thing is to take each step one at a time. Heart valve issues are so common and dealt with relatively easily, so concentrate on that first. You can give your stomach issue worry time later on. I was told I might lose my stomach and was really surprised to hear that it's entirely possible to live well without it!

When I was really worried about things, my nurse told me take time in chunks, each day at a time or even an hour at a time and to make each chunk of time as good as possible. It really helped me to stop looking too far ahead and catastrophising all the time! I'm not always positive but getting outside in the fresh air really helps. I have to really make myself go out some days but I'm always so pleased that I did.

Good luck!

Sparky xxx

Hi Maureen, I’m so sorry to hear of your diagnosis. I can fully understand your worries just now as it’s something you never think is going to happen to you.x

There is always a ray of hope! I put my trust in the doctors and that they would do the best for me and so far so good. My way of coping is to think of the doctors role is the medical side and my role is to think positive( good medicine) rather than worrying about the worst outcome( bad medicine) 

I know it’s easier said than done but I had to think it would all be ok and I would be out the other side changed but still here. Surround yourself with positive people, eat well and spoil yourself a wee bit. 

take care, 

Mandy xx