Long delays

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Hello. My dad started having problems last Sept and we keep hitting delay after delay. When it first came back that he had kidney cancer, we were told we would wait two weeks to hear back.  It took over 6 and then they needed another biopsy which took another two weeks and then another two weeks for results.  By this time the cancer had started to spread.

By early Feb it had moved to other organs but we thought we still had a chance of removal of kidney ( all Jan he was bed bound and with incredible pain). A week later we were told it had spread to liver and lungs and was terminal.  

We finally fit a referral to palliative care and steroids and decent pain relief are helping, but we still haven't had an appointment with an oncologist. 

I understand that this seems a very aggressive form of cancer, but these delays are literally killing him.  It's almost 4 months after his first diagnosis of cancer and he hasn't been offered anything to slow it down at all.  

I suppose I just wonder if this is normal and what I can be doing to speed this up. Does going private help? Does terminal definitely mean terminal or are there other avenues we should explore? He's starting to give up but my daughter loves him to pieces so I want him around as long as possible.  

Any advice gratefully appreciated. 

  • Hello, so sorry for what you are all going through. It does sound as if you have had long delays and I don't know why this would be, as they are usually 'on it' quickly as far as I am aware. Can your dad's GP help? Also. I would call Macmillan for some advice. Best of luck - I hope you and your dad get some relief.

  • I would get in touch with the secretary or department that's been organising your biopsies or was going to arrange the nephrectomy and ask to see a consultant face-to-face, either in urology or oncology.  Or you could try PALS if you're in Eng and Wales.  Patient Advisory and Referral Service.  It sounds like you've dropped off the system.   As it's spread to other organs, you should be a patient of oncology and the support lines in to specialist nurses to match.   I would suggest you need to make yourself a polite nuisance to your NHS.  We have seen referrals go missing on here, or never made.   Good luck.  

    There's terminal and "incurable but treatable".  The latter has an objective to manage the cancer by shrinkage or stabilisation.  This can carry on for many many years.  It's more common with the advances in oncology these days.