What question do you ask on first follow up after nephrectomy procedure?

What question do you ask on first follow up after nephrectomy procedure?

  • I've not had a nephrectomy, but I'd be asking what the scan results show.  But they're going to tell you that anyway.  The proposed frequency of CT scans/updates.  I'd also be asking whether adjuvant treatment is available and if you are suited to it.  Many other cancers offer all kinds of treatment to mop-up small cancer cells or treatment to maximise the chance that it doesn't return.  Kidney cancer is way behind other cancers on this front, although adjuvant immunotherapy is on trial in a few centres.  

  • Many thanks Pray 

    gives me lots (more) to think about

    its a very anxious and fearful waiting period 

  • I hope you've got a good consultant, get on well with them and are able to build a good trusting relationship.  It makes all the difference! 

  • Hi Niko, 

    Basically everything Mmum said Thumbsup tone1 I had my follow up from Nephroureterectomy in June, I made sure I had someone with me and had discussed what I wanted to know beforehand incase I froze once in there and forgot what I wanted to know! As Mmum said they basically tell you how it went, show you the scans and the pathology results. Due to lack of data regarding moving forward,Cry unchartered waters were discussed, (as kidney cancer lacks data due to lack of funding for trials) Cry but I was told I would be having regular CT scans and also cytoscopies every 3/6 months to start with.

    hope it goes well

    x

  • Hey I thought of something else!  You could ask what the post-op protocol is if you feel really rubbish, ill, or in pain.  Probe for a CNS (cancer nurse specialist ) phone number.  Basically a hotline in to your consultants so you're not at the whim of primary care (GPs).  Or a urologist out-patient support line.  You don't want to be going to the GP with post-op neph issues - not their remit!  I suppose this can't last indefinitely but it would be good to know when you're on your own.  We get people posting here who are in pain, or feel abandoned, and they have no contact details for the dept who last treated them.  

  • Yes!!! I have an amazing CNS who I can contact at anytime and she responds as quickly as she can, she follows up my results, and then once cleared with consultant, has even phoned me with them to support my mental health Heart

    I know I am extremely lucky to have this support, and am so grateful, she is also my husbands CNS so we really do feel looked after. 

  • Thanks that very helpful 

  • Thanks that’s very helpful 

  • Thanks that’s very helpful 

  • Mine was about seven weeks later and done on the phone. Doc said everything was fine. There were no contact details given at all. Later I found out the unit has its own Macmillan team so I contacted them. 

    It's all been pretty casual and vague. Of course it all depends on the individual circumstances of the procedure. Mine took six hours. I am on a regime of bloods and CT scan about every eight months. Everything ok touch wood so far but reoccurrence is quite common.

    Best wishes