Synovial Sarcoma

Hello, I have recently been diagnosed with soft tissue synovial sarcoma of chest wall., which cant be cured, just controlled. 

I am annoyed that my life will be shorter than planned, I haven't been married long and my husband and I have had to shelve any plans for the future, as I don't know how long I have.

The tumor has destroyed one of my ribs, and some days  the pain is so bad all I want to do is sleep.

It would be so helpful to me if anyone else has the same cancer, as I am told its rare, )circa 79 people per year diagnosed) if you could reply to my post.

Scared, angry, sad, in pain, are there any pluses about cancer? 

Thanks. 

  • I am so so sorry for you and cannot begin to imagine how you are feeling.  I am currently waiting to see a specialist at the sarcoma clinic - I have a mass on my upper arm - thought nothing of it tbh and when I saw my respiratory consultant (asthma) as I had a cough that will just not shift I told her and she sent me for an ultrasound.  I had the ultrasound on 5 March and it was a consultant radiologist who said it was definitely not a cyst and not lipoma (fatty tissue) and I needed an urgent referral to the sarcoma clinic.  I have had my appt through for 7 April (Liverpool) but I thankfully have Bupa with work.  Because its so rare there is nobody on Bupa I can see in Liverpool so I have an appointment on Monday with a specialist at a private hospital in Manchester.  I am hoping an praying for some good news on Monday and that I have now been worrying about nothing but time will tell.  I have been researching on the Sarcoma UK website and on a positive for me it says 8 out of 10 referrals are not malignant, however it also says that's because they are a cyst or fatty lump - which I know from my ultrasound this isn't the case - the waiting is driving me nuts! For you I would say try to stay calm and remain as positive as possible.  Take all the advice you can get and if you feel like you need or want a second opinion ask for it - you have to advocate for yourself especially with the NHS the way it is.  I truly hope you get on a positive treatment plan.  Sending positive thoughts your way x Keep us updated on how you get on x

  • Thank you for reaching out to me, this means a lot.

    In less than 9 months I went from 14 stones down to 10, I had no appetite and I had chronic iron deficiency anemia picked up after numerous blood tests and abnormal inflammation markers in my body.

    After seeing my doctor I was referred to my local hospital under the 2 Week referral for suspected cancer, when like yourself cyst/lipoma was ruled out. 

    My local hospital undertook two biopsies, the second of which was sent to a leading sarcoma hospital in the UK. Diagnosis soft tissue synovial sarcoma.

    I have been referred to another hospital, where I was immediately put on steroids and have put one stone in weight back on, feel so much better as a result, plus I am starting on a course of chemo in a few weeks.

    My close family know about my cancer, but I really don't want friends/relatives who I haven't seen for years to know  

    A massive plus point for you is your Bupa membership, this should open doors quickly for you.

    I truly hope that you get good news on Monday xx

  • Hi, how did you get on on Monday?

    You haven't posted an update and I am thinking about you, 

    Sending you best wishes that your appointment went well  xx

  • Sorry... I am booked in to have it removed - wide excision biopsy next Friday 4 April - then its just a waiting game for the results... waiting is so hard!  Hope you are doing ok xx

  • Hi, just saw your post and I'm awaiting a CT scan.. saw the G.P 3rd March re lump at top of my arm...bloods were taken and referral for CT and Orthopaedic Consultant... I have badly controlled asthma [ don't tolerate steroids]  very breathless and continuous cough.. I have also been under investigation for bowel issues.. my GP told me 'I think your breathlessness is related to bowel/lung cancer'...and not your asthma.. call from colorectal consultant who said further investigation needed,  appt for Ultrasound.. then I  noticed the lump..it is the referral to Orthopaedic consultant that concerned me.. brain querying possible link and referral to bone Doctor...

    I noticed your post was a couple of weeks ago.. hope your appointment went well..

  • I agree that the waiting is excruciating. After waiting weeks for my chemo treatment to start, on the day I was not well enough, high temperature and blood pressure, and c protein markers in my blood were abnormal (over 100). So I am on antibiotics for a week when hopefully they will start chemo next Wed. 

    I am not feeling too optimistic tbh. All the waiting drives you crazy  

    I will be thinking about you on the day you have your wide excision, all the best for a positive outcome Xxx