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Synovial sarcoma

Florence18Florence18 Posts: 2
edited March 2020 in Diagnosis & Appointments


ive recently been diagnosed with high grade synovial sarcoma in my left thigh. I’m currently having radiotherapy which I’m finding tough and I have 10 sessions left. I’ll be having surgery to remove it in June and the chemo after.

Its all really scary as there is not much information out there on sarcoma.

Is there anyone else here with it or who’s had it?.

Many Thanks


  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭


    Hi Florence,

    Unfortunately I am unfamiliar with sarcoma, but I just wanted to write and welcome you to the community. I really hope someone else will be able to help you with some information or tell you about their experiences.

    I am very sorry to hear of your recent diagnosis and I do understand how scary it is to receive this news. Scary is an understatement, there is nothing that can prepare you and the shock is enormous. It will take sometime for you to process everything I expect. The thing is to try and remain positive, its good the cancer has been exposed, now something can be done to get rid of it. You have a long road ahead with treatment and surgery, take one day at a time, rest as much as you are able. It isn't being weak, it is a proactive thing helping your body to recover and get stronger. Radiotherapy does cause extreme fatigue which will linger a long time after you have finished the course.

    Take care with your skin, I am sure you have already been advised of this.

    There are many of us here now, and even though the cancer may be different, we all understand about the impact cancer has on our lives, so you will find a lot of support here. Please keep in touch let us know how you are doing, you are welcome to join in on any conversation.

    Chat soon,

    Lou x

  • Florence18Florence18 Posts: 2

    Hi Lou,

    Thank you for a such a lovely message, I really appreciate it. It is very scary and feel trapped with how I’m feeling which is made worse as this kind of cancer is rare and hardly any information is available. I’m doing as you said by taking it day by day and I’m down to 9 sessions of radiotherapy left and feel so tired and sore from it. Im using moisturiser daily but still feel the heat which I’m managing with an ice pack.

    All the best to you and thank you once again.

    amanda x

  • SunshinedaffSunshinedaff Posts: 1,410 ✭✭✭✭✭


    Hi Amanda,

    I am sorry the effects of radiotherapy are getting more intense, the tiredness will stay with you for quite a long time, but I hope the skin will recover sooner once radiotherapy is finished. The sunburn feeling is horrible, let the nurses know if it looks like becoming infected though and they can give you some cream.

    Even though you might not be able to find information about it, try not to let that build up into something worse. I am assuming you have a good medical team around you, who know what they are doing. When I was diagnosed I didn't ask any details about the cancer or the treatment especially and I made a point of NOT googling the cancer or anything. For me, that would have just increased my fears. Sometimes, not knowing everything is the better way. Maybe some one else here will have the same as yourself, there are lots joining now, hopefully they will speak up, if you are needing information.

    Hang in there Amanda, we are all with you, you are not alone.

    Chat soon,

    Lou xx

  • ZoeyZoey Posts: 1

    Hi Florence

    I was diagnosed with synovial sarcoma on 21st march, they removed the tumour from my knee on 3rd april i have got to have radiotherapy still. It has been so quick since diagnosis to surgery it still doesnt seem real. Due to the size and location of my sarcoma is why they opted for surgery first. I also have hypermobility which hadnt helped with recovery. I wish you all the best and sometimes it helps to know there is another person going through the same. I had my surgery at Stanmore the spealist sarcoma unit. I can honestly say it was worth the travel for me the staff are lovely and help so much.

    Take Care

    Zoey xx

  • MrBumpsMumMrBumpsMum Posts: 12
    I was diagnosed with a high grade synovial sarcoma in 2007 in my right forearm, I had 25 fractions of radiotherapy followed by surgery (my scar is from my elbow almost to my wrist), I had shared care between my local hospital where I had my radiotherapy but saw my main consultant Mr Briggs at Stanmore (orthopaedic hospital) I didn't have chemo as from what I understood sarcomas aren't responsive to them, this was obviously a long time ago and I know treatment has moved on loads, if I can help in anyway just drop me a line, I'll do my best to help ☺️
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