Potential Sarcoma Waiting Frustration

I just need somewhere to vent with people who understand how difficult the waiting game is. I first saw the GP back in July and I’m still no closer to a diagnosis. I’ve had an ultrasound and MRI on a soft tissue lump where both have come back inconclusive and my results have been sent to be discussed at a MDT meeting which was last Thursday (2 weeks after I last saw my consultant). I was told to call today to see what the plan of action is, most likely which type of biopsy I will need to get, but my consultant’s secretary hasn’t picked up after calling 3 times throughout the day. I feel like it’s been really difficult to get answers from anyone and I’m going crazy waiting. My consultant is an orthopaedic surgeon, not an oncologist. I know sarcoma is so rare so it’s not his speciality and the NHS is overwhelmed but I’ve just felt like my consultant has been really impatient when I’m asking questions and it would have helped if I could speak to someone who knows more about what I could be potentially facing. He kept telling me he has to follow the pathway but wouldn’t give me an answer on what that was and online it seems like I should have been referred to a sarcoma centre or at least spoken to an oncologist by now? Or would that not be relevant since I haven’t had a biopsy? or does my results being looked at by the MDT mean I have been referred? Thanks

  • A very warm welcome to the forum Dinosaurcat89 although I'm sorry to hear you're still waiting for a diagnosis.

    I can't begin to imagine how frustrating this must be but I and the rest of the Cancer Chat community are here for you Dinosaurcat89 and will have our fingers crossed that you will get some answers soon.

    If you would like to talk things through with someone, then do give our cancer nurses a call. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m and will do all they can to answer your questions and put your mind at ease about everything that is going on.

    You may also be able to get some further information and advice about your situation from Sarcoma UK.

    I hope writing everything down helped to clear your mind Dinosaurcat89 and that you've finally been able to speak to your consultant's secretary since making this post.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi Steph. Thanks so much, I have managed to speak to my consultant and have a clearer picture of the next steps. Was feeling a huge amount of anxiety when I wrote this and writing it down definitely helped. I’m sure the anxiety won’t go away completely while I’m still waiting and I’ll have highs and lows but I’m feeling a lot better than I was for sure.