Long wait to see expert or anyone!

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Hi 

I have been on this journey since September 13th 24 when my GP found hidden blood in my urine during routine tests. Gynae tests came back clear. I then had a cystoscopy also clear and then was sent for CT scan of kidneys and pelvis on 22nd November. A week later I found a letter on the nhs app; the paper copy didn’t arrive for another five days. The letter said I have a small suspicious.area on my right kidney and that I would be referred to the multidisciplinary team who would. I text me after they’d met. I eventually managed to speak to the doctor who wrote the letter on the phone two days after I found the letter. She told me she expected a cancer diagnosis at the MDT; the meeting was on 6th December. I’ve heard nothing and when I try to call the number I rang previously it now just rings out with no answerphone. It’s frustrating to say the least. 
What’s the usual timescale for these things? Im so anxious to hear what’s happening that sometimes I’m too stressed to go to work and just in my head about it. 

  • Hi  

    It sounds like a very difficult time for you at the moment, not knowing what next steps may be and also with being unable to contact the team that are responsible for your care.

    I'm afraid we wouldn't be able to say what is or isn't a 'usual' time scale as they can differ, though if you have the details of any Consultant responsible for your care, it may be possible to speak to their Secretary and leave a message - you can normally do this by calling the main hospital switchboard and asking to be put through to them or their answerphone. 

    Can I ask have you reached out to your GP to see if they can chase anything for you, or possibly spoken to the patient advice liason service at the hospital? In England and Wales this is commonly called the PALS team, and the PASS service in Scotland.

    If in England, you can find out more about how to contact them here

    If Scotland, you can contact their teams here 

    If Northern Ireland, the Patient and Client Council can be contacted here

    If you're in Wales, please contact us on the support line on 0808 808 0000 (option 1 and then 1 again) and we will be able to find the relevant contact details for your local care board.

    It's understandable to be anxious about what next steps may look like when it comes to a possible cancer diagnosis, . Although not trained counsellors, we're here at the macmillan support line to talk things through when you may need the space or someone to listen.

    You may find it helpful to talk to our Nurses here on the support line too about what has happened so far or any medically related questions you may have - you can do this by calling the above number and choosing option 1 and then 3. Their team are open 8am until 8pm every day of the week. You can also talk to them through their 'questions for a nurse' page here or by live chat and email. 

    I hope this has been helpful for you, please do let us know if you have anything else we can help with.

    Take care,

    Rebecca - Macmillan Information and Support Adviser

    Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.

  • Thank you 

    I’ve now had an appointment come through for 30th January, no details about what it’s for just in the urology department. As this will be more than three months after my urgent referral was made I’m going to contact PALS.