Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.

Synovial sarcoma

lissa2015
Posted by

Hello I'm new to all this but has anyone had anxiety following their cancer diagnosis. I'm currently 3 years in remission from stage 3 synovial sarcoma cancer. Would be great to hear other people's stories 

Thanks

Carolyn28
Posted by

hi  

I think anxiety is pretty common

Usually I get away with about an hour a day to dwell on the what if's and why's and wherefore's

Keeping busy helps, what do you do day to day ?

hugs

Carolyn

xxx

lissa2015
Posted by

Hi Carolyn i work full time and I am also a mum to a busy 4 year old. I suffer with vertigo which makes some days much harder than others. I meeting with a specialist tomorrow to see if there is and underlined issue. Fingers crossed I get a result.

Thanks for taking time out to reply. X

Carolyn28
Posted by

I must admit I had to Google synovial sarcoma, how on earth were you diagnosed ?  it must have take ages to work out the source of any problems ?

Do you send the 4 year old to nursery or do you prefer keeping him or her home for as long as possible ??

Carolyn

xx

src60
Posted by

My wife has leiomyosarcoma, and while for her they do not say remission at the moment it is stable, as Carolyn suggested for us the route to diagnosis was long and mixed with other issues - you can read some of our story if you click on my id in the title of the message.

There is a lot of information on sarcoma on the sarcoma uk website an issue being of course that being quite rare they focus the care on a few key centres. Most doctors will never meet someone with sarcoma and the number of times we have seen a GP reach for wikipedia.

Some slightly weird things have helped us, there was a guy stabbed in our local poundland, just a case of wrong time wrong place but by wife had been there just 30 minutes before.

The hard conversation with our son, trying to find books that talked about cancer but not about cure. The only real question my son asked was what would happen to him if I died too - his cousin is adopted and his parents are our nominated guardians so that was quite helpful.

Other than that we are where we are.

<<hugs>>

Steve

cathchris
Posted by

What treatment did you get 

I was told mind was intermediate took four months to diagnose had surgery & radiotherapy & year later shadow on lungs now going through chemo to control & manage cancer no mention of cure or surgery have to young boys 1& 3 and it's hard to cope. 

lissa2015
Posted by

I had it for around 2-3 years before I was diagnosed. It was a very difficult process as I was sent for numerous scans and biopsies whilst looking after a new born so I think that has contributed to my anxiety. I have come to terms with the fact that anxiety and cancer is always going to be apart of my life and I'm just finding ways to think positive and live life to the fullest. 

Xxx

lissa2015
Posted by

Thankyou for your kind words and replying I wish you and your family all the best 


lissa2015
Posted by

Hello cathchris I had intense radiotherapy and limb saving surgery. I know exactly where you are coming from my little girl was 9 weeks when I was diagnosed and it truly was the hardest thing in the world. I found counselling has helped me tremendously and I am also on citalopram which helps as well. I just took the help I needed. Do you have am oncologist if so I would make a list of questions you need to know and make an appointment. Maybe ask for some councillors support as well. As for your children I found I worried about the what ifs ect if the worse was to happen so I spoke to family members who put me a ease because I knew my little girl would always be looked after should anything happen to me. 

 Please private message me if you need to chat. X

Jessica97
Posted by

Hey, 

I've only recently been cured this year but I created a blog following my experience if you'd be interested in looking at it. 

http://jessicassynovialsarcoma.blogspot.co.uk/ 

I suppose with it being recent I do get a lot of anxiety at any lump or bump or whenever my next scan is due and I think its something that will be long term and perfectly normal, no one can tell you not to worry cause you will but as long as it doesn't consume you its okay because general nerves leading up to appointments and scans is completely normal. Well done for getting through it and I hope you continue on in good health, pat yourself on the back for being so strong and living because it really is an accomplishment to continue to live life to the fullest after something so traumatic. Lots of love and hugs your way. 

Jessica x

Meggi13.03
Posted by


Hello Lissa, please tell me how you feel?