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Hello I’ve just had kidney surgery full kidney gone and tumour it was 9/10cm in size had results from removal and I’m a tb3a  been offered chemo and immune but I have clear margins 

so I’m unsure what to do as they said if I I have the treatment and get the cancer back in the same place then I won’t be able to have the full treatment again

so I’m thinking do I just wait and see if any cancer shows on my next scan or

what if the tissue that’s left has cancer cells and then didn’t take that bit for biopsy 

im just so confused and scared anybody had this happen to them  thank you x 

  • I believe the standard approach after a nephrectomy (kidney removal) is to now have a short course of pembrolizumab to mitigate against its reoccurrance.   Pembro is an immunology treatment.  If it re-occurs then they would treat the new growth appropriately.  Probably not with pembro because you've already had it as an adjuvant treatment, but perhaps with another immunotherapy treatment.   

    I suggest you go back to your team and ask for further clarification.  

    When I was having treatment I asked my onco, at length, about 1st line, 2nd line of treatments, and if one immunotherapy didn't work, would the next treatment "choice" be classed as 2nd line.  The answer was that I could have several different immunotherapy treatments under a 1st line treatment approach.  2nd line started after new growth or re-occurrance.  It was made very clear to me that you don't have one chance at it, and that's it.  

    Kidney cancer has been miles behind other cancers in the adjuvant approach for years.  The current use of immunotherapy as an adjuvant treatment, to prevent (hopefully) the cancer returning is relatively new, in the last 2 years.   But they will still treat any re-occurrance, if they are able to.  But they won't treat it with the same method as before because that's not had the desired effect.  

    I've discussed with onco what our approach would be if mine started growing again.  I've had the immunology treatment of ipilimumab and nivolumab as 1st line treatment.  Any re-growth my onco would recomment nivo (because it's been very successful for me) and a new/different immunotherapy drug.  

    what if the tissue that’s left has cancer cells and then didn’t take that bit for biopsy

    That's what the adjuvant immunotherapy treatment is for, after the kidney removal - to mop up any remaining cancer cells.  

  • Hi Donnakatie, sorry you are here but you are not alone.

    Mmum is, as always spot-on with what she said.

    I can only add my own take.

    Firstly whatever you decide is right for you, as Mmum said ask your Drs for further clarification.

    My questions to them would be

    What is their best estimate of a % chance of re-occurrence?

    Then what improvement does the adjuvant treatment give (5-10%??)

    You may think any improvement is worth it, wouldn't anyone.

    However, once kidney cancer has metastasised, one of the gold standard 1st line treatments is ipi/nivo followed by nivo maintenance (which is what both me and Mmum have had and had great success on)

    You need to ask your Dr, if taking an adjuvant therapy now will reduce the effectiveness of further  immunotherapy down the line if (God forbid)you do get reoccurrence. 

    Difficult choice but you do have clear margins and from what you said you are now cancer free I do hope it stays that way.