Follow ups

  • 11 replies
  • 49 subscribers

I was wondering how often you guys get follow up scans, ie the more advanced the cancer is I guess your scans should be more frequent or does the NHS tend to have only six month at a time in general? 

  • Hi Philw,

     I have scans every 3 months while I have been on treatment 

    Sandra 55
  • Oh right I see, thanks 

  • You have been through a lot and seem to be doing great . I see you have had immunotherapy but have followed that with different drugs for years so well done to you . You really inspire me .

  • Hi, according to my kidney nurse, here in Hull all partial nephrectomies are done as high risk follow up. That is first CT scan a 6 month, then the next two yearly then 2 yearly etc. For 11 years. Not sure what radical follow ups are though.

  • I'm stage T1a and my doctor told me that I will start with CT scan every 6 months. And that I will need to be monitored for 5 years.

  • Hi - there's two scenarios here:

    1/ Nephrectomy (full or partial) then scanning to check for success or signs of re-occurrence of the b*55*r. 

    2/ Treatment (usually after metastatis) then frequent scans to monitor whether treatment is working.  

    I'm in the second situation.  

    Once the treatment started I was on 3 monthly scans.  The treatment did its stuff (tumour got smalller and the mets disappeared) so we pushed out the scans to 4 months.  Scary - a bit! 

    Then I started a trial.  The trial mandated scans every 8 weeks.  Oh. My. God.  Too frequent!  I was always in the bl00dy hospital!  Weekly!

    After 6 months of the trial the scans changed to 3 monthly.  

    I started having a conversation with my oncologist suggesting every 5 or 7 or 11 months would be appropriate.  Note how my stance changed after 2 years of productive RCC treatment!

    We're going to roll onto 5 months soon and I'm planning the last treatment in May with my onco's support.  I've had all the benefits of treatment now and I want to stop before I get an impactful side effect. 

  • Thats great stuff , thanks a lot 

  • Hi, so this is your last treatment of this drug or have you decided that you wish to have no more treatment at all ? 

  • Last treatment will be May 2024. After that no drugs/treatment, just scans until something initiates a change.