soft tissue sarcoma - advice please

[MargaretMountford]

am a bit shocked as my 21yr old niece seems to have this - only just been told -can anyone tell me more ?

pl;ease

cancerbacup.co.uk
good site she may need surgery

Where is it, Margaret? My father had one in his abdomen, which is a fairly unusual location. They mostly occur in the arms and legs AFAIK.
It is a pretty rare type of tumour anyway. Prognosis varies a lot depending on the site of the tumour and how early it is caught. Can you give any more details and I will be of any help I can.

Want to add here, if your niece needs surgery it is VITAL that she is operated on by a specialist sarcoma surgeon. Because it is such a rare form of cancer there are not all that many surgeons who routinely perform sarcoma surgery and it makes a huge difference to outcomes.
She is very young to have this, and if caught early the prognosis is pretty good.

hi LGP - it is under her arm...she was out in NZ travelling and has come home where she is having an MRI scan tomorrow - I think she has seen a sarcoma specialist already and has her scans etc from NZ - that's all I know at the moment - think it has been caught early-apparently is very fast growing

www.sarcoma-uk.org/

www.sarcoma-uk.org/sts_links.htm

I'd second the sarcoma centre advice - it is very important she is seen by and operated on by someone who sees a substantial number of sarcomas every year. Their expertise is essentail to a good outcome for your niece.

And as a general rule surgery is the option as very few drugs (if any) fight sarcoma effectively.

thanks gagarin and megcleary...will look them up

There are lots of people who might think of themselves as specialists - but not many real specialists!

In the South East it's Prof Judson at the Royal Marsden in London? Mr Cannon and other surgeons at Stanmore RNOH?

Not sure about elsewhere.

Yes, they are fast growing MM, my Dad's was huge when he was diagnosed - he had been seeing a chiropractor for back pain for several months instead of going to the doctor and the chiropractor didn't notice
But one under the arm is likely to have been caught early and if she is seeing a sarcoma specialist so quickly it should be a good prognosis.
Do not alarm yourself by looking on the internet, you will see lots of scary stuff about sarcomas, but given a good specialist cure rates are good.

thanks -= am trying not to care myself !
@ your dad's not being noticed by chiropractor LGP- I hope he is recovered now. She is in East Midlands btw..I see there is a sarcoma support group there...I don't want to bombard SIL with info as I'm sure they will be finding out stuff themselves.

scare nor care, though I do care !

My Dad died as a result of his surgery MM. One of the reasons why I was banging on about the important of of an experienced sarcoma surgeon.
Also, his tumour was very, very large and wrapped around various bits of his intestines. And he had a clotting problem. So the surgery never had a real chance of success basically.
Unfortunately, we only realised this afterwards.
I don't think your niece's case is likely to be in any way similar. The abdomen is a pretty bad place to get one of these things.

oh LGP I am sorry - but thank you so much for your sage words...am just letting it sink in a bit - my natural inclination is to find out about things - you have been very helpful.

Depending on exactly what sort of sarcoma it is (there are lots of different types, some of which occur more often in young people), she will def need surgery, probably chemotherapy, and possibly radiotherapy. They can be very fast growing, and the first stage of treatment may happen very fast

Wishing your niece and family luck

thank you - we've just been away to visit family and saw her parents -they are calm but anxious. MRI scan is on Monday which should make things clearer. It might of course be nothing, but everyone equally prepared for something serious..thanks for good wishes and advice.