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Diagnosed with rare form of sarcoma and waiting for appointment - what can I expect?

LizzieDe
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Hi. I was diagnosed with a rare form of sarcoma last Thursday.

I have had tumours for 2 years and undergone numerous tests but it wasn’t identified due to its rare nature. I have had two tumours surgically removed but one can’t be removed due to its location. They identified these tumours as cancer after removal. 

My referral has been sent as urgent. My specialist said I would hear from them in a matter just a few days.

I haven’t heard anything yet and the referral went in last Wednesday. 

I’m just wondering if anybody knows what to expect regarding this. I’m trying not to overthink it but sometimes I just don’t know where to put myself x

  • Hello LizzieDe

    I'm sorry to hear that you've recently been diagnosed with a rare form of sarcoma after having undergone various tests and a surgery in the last 2 years. It's understandable that this may have been overwhelming news to hear and that you've been left with a lot of questions. 

    Hopefully, by now you've had some news regarding your referral, but if you've not heard from the specialists yet, then don't be afraid to give your Consultant's secretary a call. They can follow this up if necessary. 

    Living with a rare cancer can be difficult, and it can sometimes be hard to connect with someone else who has experience with the same diagnosis. If you've not already done so, then I'd suggest having a look at the Sarcoma UK website as well. 

    In the meantime, if it would help to talk things through with one of our team of nurses, then you're welcome to give them a call. I know they will be happy to listen and offer any advice, information and support they can, as well as help you think about questions you might want to ask at your next appointment. If you'd like to chat with them, they're available Monday to Friday, 9am to 5pm on 0808 800 4040. 

    Keep in touch, LizzeDe and let us know how you get on; we're here for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Thank you. I still haven’t heard but have no idea of what sort of timescale to expect. I rang my local hospital on Monday to check and was politely told not to be impatient and wait for them to call me. I only called because the previous specialist told me to phone if I hadn’t heard by Monday. I might give the centre I have been referred to a call. 

  • Offline

    Hi LizzieDe

    i too have a rare Sarcoma. I was diagnosed a year ago. Hopefully you have been referred to a specialist sarcoma centre? , if not then ask to be urgently. They will not mind you calling to check next steps/timescales. In my experience they move very quickly but have weekly meetings to discuss new patients and sometimes these need to happen before they contact you

    Sarcoma uk are brilliant for support and information, I would recommend contacting them once you know more

    I wish you all the best x

  • Offline in reply to LizzieDe

    So I phoned and the cancer centre have received no referral for me but my local hospital says it went electronically on 6th. Is there a team who deal with referrals and then send it on? Perhaps it’s stuck in the system somewhere. 

  • Offline in reply to LizzieDe

    Hi, I was referred direct to the sarcoma centre and they confirmed receipt 2 days later despite a bank holiday and explained timescales immediately . Perhaps ask for a copy of the referral and send it to the cancer centre yourself? Sorry you are going through this admin nightmare, really not what you need at this time x

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