Suspected Sarcoma Diagnosis..........waiting waiting and waiting

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Dear All 

Any help gratefully received, how do you survive the long journey of unknowing. 

Journey started back in September with a 111 call, as I couldn't get a gp appointment for 6 weeks at surgery, even when I explained it was about a concerning lump.  3rd referral in to 3rd hospital from gp and I now seem to be in the system at last and awaiting MDT meeting, hopefully on the list for Monday, if gp surgery have actually at last forwarded on ultrasound report. 

The waiting game is just doing my head in, it's so frustrating that no one seems to know what they are doing from gp end, feel like I'm always emailing to chase people to do their jobs with no response.

I hadn't wanted to tell my children (grown up children that is) till there was something to tell but I'm going insane with the long wait and I'm starting to get more shitty with people, than even normal peri menopausal me Laughing

I feel like I can do any treatment they throw my way, I'm strong and we're used to what cancer does within the family but the waiting is just like nothing I've ever experienced Pensive  I'm so distracted at work.

I've had breast scares previously and you're in checked and out in no time.   How long does this all take with suspected sarcoma, in your experience? 

  • Hu Poohbear77

    Sorry to hear your having a delay in getting a response, hopefully it's not a cancer diagnosis you come back to, as sarcomas are pretty rare.

    I was initially diagnosed in January 2021 following a "lump" removal, which they though was a cyst, (details in my profile if you want to read) but once diagnosed things moved as quickly as times in covid could! 

    If you are diagnosed, then you will probably find things move quite quickly eg CT scans, biopsies and a treatment plan. 

    Take care

    Krazychrissy

  • Oh thank you lovely,

    It does sound like once diagnosed things do move swiftly from stories I've read.  I'm just being impatient and I need to chill, my mum's original sarcoma was missed and that's playing on my mind a bit. 

    I really appreciate you reaching out and sharing your story x

  • Hi Poohbear77,

    Did you hear back from your MDT review?. I am in the same place as you, waiting for results back from MDT today. Oh and peri-menopausal me trying to stay calm as well Slight smile. Take care Krazychrissy x

  • Hi lovely 

    Yeah I had a call on Friday, outcome was its definitely in the muscle but the ultrasound was not clear as to what it was, so staying on cancer pathway and booked in for MRI next Friday.......its really slow but I do feel like I am on the way now at last. 

    I feel like Christmas may be a bit weird.  

  • Glad you got your call, I'm sure the MRI will give a clear view of what's going on.

    Enjoy Christmas, I had to do the same back in 2021 - don't let anything stop you having a good time during the festivities!!

  • Thank you, it plays on your mind and just need to keep distracted x