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Probable kidney cancer multidisciplinary team meeting

Lisbrum
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Hi 

my GP found hidden blood in my urine in September, initially we went down the gynae pathway and scans and hysteroscopy were clear. I then had a cystoscopy on 9th November which was fine. The doctor who did the cystoscopy sent me for a pelvic and kidney contrast CT scan. They put a letter on the nhs app two weeks ago saying I have a suspicious area on my right kidney. When I was finally able to speak to a doctor I was told they are pretty certain it’s cancer and the MDT met on 6th December, I was told the wait is two weeks before I’ll hear anything. That sounds like such a long time especially as the hidden blood was first found on 13th September. Does that length of wait seem normal? 

  • Hello and thanks for posting

    I’m sorry to read about your situation and appreciate how difficult it is waiting for things to happen after this news.

    Many people worry that if they are diagnosed with cancer it will spread while they are waiting for appointments and to start treatment. But we do know that most cancers grow slowly, so waiting a few weeks does not normally affect how well treatment works. However, waiting any length of time when you are worried is stressful.

    Whilst there are set out times and guidelines for cancer diagnosis and treatments, they are I’m afraid only recommendations. Unfortunately many patients are waiting much longer than ideal at the moment in the NHS especially if more tests need to be carried out and this can cause a lot of anxiety for both patients and their families.

    It’s good you have an appointment coming up in the next week where I hope you will find out more.

    Give us a ring if you would like to talk things over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene

  • Offline in reply to CRUK Nurse Celene

    Thanks Celene 

    j don’t have an appointments coming up, I’ve heard nothing. I’ve been phoning medical secretary for two days but there’s no answer. The answerphone isn’t even on. I’ve phoned the out of hours number and left a message but no one has called. 

  • Offline in reply to Lisbrum

    I had an ultrasound in July that I was told was clear, but because of continued bleeding and feeling generally rubbish I was given another one last week and a Cystoscopy. In the scan I was told I would be having an urgent CT scan, which I had on Monday but no results as yet. The scan is for midpole Renal lesion in right kidney, which I only know because I sneaked a look at my notes when the nurse left the room. 

    Waiting is pretty horrible and I hope you’re ok.

  • Offline in reply to LGG43

    Yes waiting is awful!! I’ve now been given an appointment for 30th January with an urology consultant. That will be more than three months after my urgent referral 

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