Hello

• So sorry to hear that, it’s a club nobody ever wants to join. What type of Sarcoma is it? Mine is super rare too Myoepithelial Carcinoma which is an epithelial sarcoma. 

Thank you for your reply.

Until I get the letter from Marsden, I'm not initially sure what it's called or the type, I simply to recall it had a 'fis' a 'his' and ended with a 'oma' but I can't remember!  

Yes I think I was the same, it doesn’t sink in at all does it?

I’m with the Marsden and they have been fabulous. I was diagnosed in 2012 with a tumour that was 10cm x 6 cm and my sarcoma went stage 4 in Jan 2013. At the time I was the first person they had ever seen with my type of Sarcoma and they’ve managed to keep me going for 10 years. 

My advice is ask questions and take notes, once you have the sub-type you can find some information on it. The team at Marsden have involved in cutting edge trails on sarcomas so they have more knowledge than most. 

I’m not sure how much you want to know, sometimes too much information can be stressful. I have 10 years of experience and have had all the ups and downs but have been very lucky up until November last year. I’ve had a normal life even after 5 operations. My chance of a 5 year survival was less than 1% even when facing terrible odds, there is still hope.  

Top tips, remain positive, it’s hard at times but hope is a huge motivator. Keep fit and eat well. I’m happy to share what I did if it will help? 

Big questions, how large is the tumour? Has it spread? Is it operable? How many have they had before in the Marsden? How did they treat it? Was the treatment successful? Chance of survival? 

Hello,

Sorry I fell off the radar for a bit. Chemo cycle one went all a bit south, but I am back again now! Nothing like a stay in hospital to help get you on the right track.

Positivity is really key isn't it. In answer to your questions, no at the current time not operable, basically I have more than 20 growths in my right thigh, groin and knee, along with a little friend over in the left groin. Plan of action is chemo to stop the spread and reduce the sizes. No expiry date given, thankfully!! 

I have found that chemo attacked my digestive system so have been prepared this time with soup, lots of home made rich in goodness soup. That has helped hugely. 

I am open to ideas, tips and hints- anything to get me through this swamp! 

:) 

Hi .I was diagnosed with a undifferentiated pleomorphic soft tissue sarcoma in my breast.i may and was also referred to royal Marsden .they have been great .I had a masectomy end of may then 6 weeks of radiotherapy .had a scan 3 weeks ago and everything clear just monitoring now every 3months .having a rare type of aggressive cancer is scary but in a way it's easier to deal with once you know what it is so you can get the best treatment. Mine was 11cm when removed and had gone into my chest muscle .so most of that removed. I'm back to work and most of the time don't think about it. I think you have to try to be positive and I know there are people out there going through worse. I feel that I was lucky to be referred to the Marsden who are specialist in this type of cancer and my cancer was able to be cut out .I wish you all the best x