Renal dietician

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Hi there, I am due to have a telephone appointment with my GP in a few weeks time and am looking to prepare myself.

I was diagnosed with kidney cancer in April 2023 and had my left kidney removed along with a 17cm by 16cm by 11cm tumour. At the time they discovered the urethra on my right kidney was damaged due to endometriosis and inserted a stent to support this. I have now been advised that i need this for life as they tried it without it a few weeks ago during stent change operation and it didnt drain.

At my last stent change a few weeks ago the consultant advised that i should be treated as if i have chronic kidney disease.

I know i am to have regular followup blood tests to check my kidney function but i wondered if it would be reasonable to ask to be referred to a renal dietician?

I also wondered if there were other questions you would suggest i ask? I just want to make sure i cover everything off that i need to,

Many thanks in advance,

Laura

Linda - Macmillan 11 months ago

Hi Laura Lollym

Thanks for getting in touch. I’m Linda, one of the nurses from our support line.

I can see from your profile that you are a member of the kidney cancer forum and I hope you are finding the support there helpful being in touch with people who have had similar experiences can be really in valuable.

I’m sorry read about the issues you have been having and that you now have a stent. When the consultant advised that you should now be treated as if you have chronic kidney disease (CKD) I wonder if they elaborated on this further.

If not it is worth asking for further clarification of what they meant by this, as this may affect the level of support that you need,

The UK Renal Dietician Workforce plan recommend that people with advanced CKD, stage 4 or 5, are reviewed at regular intervals. They also recommend that and those with an earlier stage CKD, 1-3, should be supported by their GP service mainly, with intervention from a renal dietitian when needed. (Page 24).

This may also be something that your GP can help with, based on information they have received from the hospital team.

In terms of questions to ask, it is good to understand the GP and wider primary care team’s role and responsibility for your care.

It worth asking about any lifestyle modifications that they can advise you about.

Importantly, would there be any changes to your health that you should monitor for and how quickly should you be assessed if needed.

As it can sometimes take a little while to get a GP appointment it may be worth asking if there should be an alert on the system to allow you more urgent access if needed.

I’m not sure if you have looked at information from Kidney Care UK or the National Kidney Federation. Though these can be really good resources for information we would recommend that any specific advice should come from your GP or renal team.

I hope this helps and if you’d like further support you are welcome to stay in touch.

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 send us an email.

Best wishes

Linda, Cancer Information Nurse Specialist

Ref: LM/LJ

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Renal dietician