Worried about Sarcoma - Lump in Thigh

Please be reminded that Sarcoma is extremely rare. When I was diagnosed this time last year, I went online to different forums in an effort to find someone with the same condition. Fact: I couldn't find one single person who was diagnosed with UPS sarcoma in their leg and going through the same journey as me! Despite several postings on here and on Cancer Research chat forum, not one person was evidently going through what I was going through! Needless to say I felt crushingly lonely and this forum was my saviour. But even back then, there were times (on both forums) when my questions did not reap any responses. As it turned out, I met a lady at radiotherapy who by some weird and miraculous coincidence was in exactly the same position as me.... we simply couldn't believe the chances of meeting that way. It was wonderful to finally meet and talk to someone who understood all your fears and shared the same questions and doubts. We have journeyed together and it has meant so much to share that with another victim.

Maybe sarcoma is on the rise. We know in general that the statistics for cancer are booming. What I do know is that there is better awareness, treatment and survival statistics now than ever before. I am living proof that Stage III UPS Sarcoma can be overcome. Despite a post-surgery infection in my limb lasting several months, posing an ongoing lymphedema problem, I now have full use of my leg and am walking as well as I did before. Overall my main problem is tiredness and after being bedridden for several months after surgery, I do struggle with what I call 'everyday life' - in short, the toings and goings we undertake every single day without a thought. My stamina levels are way lower than before This may well be a result of the radiotherapy. I'm desperate to get back to the gym, but, hey, I'M ALIVE and I give thanks for that every single day.

If anyone out there is diagnosed or suffering from Undifferentiated Pleomorphic Sarcoma - please do not hesitate to ask anything that lurks in your mind. My head was bursting with stuff and this forum was always there in my hour of need.

To all of you, I wish you good fortune. My resolve was to stay positive, stay strong, remember your family will struggle too and they have their own burden of fear. Eat healthily as much as possible and do look at any clinical trials running that may be of help. And, lastly but not least, pray..... my heart goes out to each and every one of you. Keep the faith 

Got my ultrasound scan results today. Unexplained mass measuring 120x21x30mm in right rectus femius muslce. Got biopsy friday 

I'll be thinking of you on Friday. That's in the quads muscle region, yes? Is the lump at the front of your thigh or more underlying?

At the front

Fingers crossed it isn't anything sinister. Will be thinking of you on Friday. I hope you are not attending unaccompanied? 

Parents are coming with me. Just worried as it 12cms long

Hi,

I am just wondering if you had got anywhere with this? I have had numerous reccurances and have a Sarcomatoid Carcinoma, which is a mixture of cancers. I have recently had a hard nodule, turned out to be a sarcoma taken out my left side.

Sucks to be me, if you need any more info though I actually have started researching it and have blogged about it. Check out PeeWeeToms I blog or vlog most days about it and have organised some cool interviews with people as well.

Even though mine is most likely going to kill me soon, there is no reason to be down about it! My life is just a celebration of awesomeness!

Hi Dan... My name is Kara, I just turned 40 and been struggling with cancer since the age of 32... Had 3 different kinds so far and the last one was a doozie... Synovial Sarcoma in my right lung... Also a very rare cancer as is yours...  What my oncologists found very odd was that the cancer was in my lung, considering it is not a lung cancer they were all pretty baffled... They removed my upper right lobe and now I have to be checked every 3 months for many years to come to make sure there is no recurrence... I wish I had some info for you on your specific cancer but I don’t and I’ve never written on this blog before now but I really just wanted to tell you that you are so blessed to have beaten the odds so far and I really hope you continue to beat them and shine some light on this terrible disease... Even though you are full of light and have such a positive outlook I’m sure you are scared to death and I just really hope you can find more people like you so you can achieve your goals and raise awareness... If I lived near you I would’ve met you for a coffee just to talk and listen... I believe sometimes that is that best medicine someone like us can get... Nobody understands how we feel unless they are in our shoes... Keep that positive attitude forever, it will keep you strong....

Hey Dan, Lol it’s Kara again... I was just reading your blog and WOW!!! Lol you remind me of myself so much... I have the same kind of crazy positive personality and I just want to say it’s really nice to see someone like myself and how you make the best of this shitty situation... When I had my double mastectomy I was getting ready to put under and all I was doing was telling jokes and laughing with the drs and nurses... My hubby was crying and I said “Babe why are you crying?” He was just telling me that he just felt so bad for what I was going through... And I had to comfort him lol instead of him comfort me... It was kind of funny in a way... I’ve always handled my cancers and surgeries really well and I’m glad you are staying so positive... Best wishes for you always Dan!!!!

Hello Rosina, My father has recently been diagnosed with ups grade 3 at the top of his right thigh. It is large, approx 12x10 cm,  deep and has a lot of blood vessel involvement. It grew so fast but he had to have emergency open heart surgery first which has delayed his sarcoma treatment by 4 months. He has so far had 5 days of radiotherapy. He has 5 weeks of this, then a big surgery at the Marsden in london. He has so much pain and struggles to walk due to the pain. He is only taking paracetamol. Is there any other pain relief he could take? Could radiotherapy shrink the tumour? Thanks in advance for any suggestions or help with this.