Onco appointment

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Hi everyone . After having my appointment I now have to decide if I want immunotherapy. My oncologist said I had a 67% chance that the cancer would not return in the next three years but with immunotherapy that would be 76% . This is not obviously a personalised stat as she accepted I am high risk with a Leibovich  score of 7 and that the tumour had  the vascular . Nethertheless I see other on here and other forums that are in the same position as me and have been advised by their oncologist to take treatment . My doctor told me the side effects could be serious though obviously they can give me meds for them . She also said that if the cancer returns whilst on the immunotherapy then I would not get access to the ‘ Good Stuff ‘ as she named it for a further 12 months .  She told me she was totally on the fence with it but to me it seemed she was veering towards not wanting me to have it though she never actually said the words. I was also told today that 4 in 5 of her patients tend not to go for the treatment . Obviously though this could be for other reasons such as age or other health conditions . I have two weeks to discuss this with my wife and then the oncologist will ring me for an answer . 

  • Oh wowzers!!  What a weird situation and, I have to say, a negative rationale from your onco. 

    If you're high risk, then my understanding is that these ones are treated with pembro.  Perhaps others who've been in this situation can advise? 

    If you have the pembro, or whatever immunotherapy is on-the-radar, and it doesn't work, the cancer returns, then that's moving on to the next stage.  A new treatment approach would be recommended.  It wouldn't be pembro because that's just "failed", but there are loads more immunotherapy drugs to choose from.  As a second "go" at immunotherapy, oncos frequently go for a TKI (eg *nib suffix drug) and Immune Checkpoint inhibitor (eg pembro, ipi,nivo, *mab suffix).  I watched a video on the kidney cancer UK website where a young girl in her 20s went through 4-5 different drugs to try and control the cancer.   Each one worked for a few months.   

    Side effects vary by individual, but on the whole, immunotherapy is much better tolerated than chemo.  My nurse specialist shared this when I started.  But there are a couple of members on here who had an awful experience with immunotherapy.  

    I would not get access to the ‘ Good Stuff ‘ as she named it for a further 12 months .  

    I find this a totally bizarre suggestion.  There is no "good stuff" with immunotherapy.  They're not ranked or categorised! There's lots of options and the onco recommends the best one in their opinion for your situation.   First I've heard mention of a 12 month timeframe too. 

    If your RCC returned whilst on an immuno drug, then there's no point in re-trying it, even if it is labelled as "the good stuff".  It would be a new one, a different approach.  The same principle applies when it works and you take a break.  Back to the tried-and-trusted treatment that worked before.  I had that conversation with my onco recently.  

    I'd ask for a second opinion from another onco and see if you get the same steer again.   I would also phone the helpline here and you'll get good open minded objective advice.  I asked for a second opinion from my onco because I didn't want to take steroids.   Onco was fine with it, and helped facilitate the 2nd opinion because it was the pharmacist at my GP I wanted to speak to.  

  • Yes thanks for that . It was a strange way of putting it and my wife and I were surprised . I felt she was trying to veer me away from starting immunotherapy though at the end she obviously said it was my choice . Alot people with my stage and grade would take it I believe, not 1 from 5 like my oncologist suggest . I also see that patients are advised to take immunotherapy with my stage and grade.it was quite the opposite I felt with me . The decision will be mine with some help from my wife and everybody on here are a great help too . I was also told that as I have never had an illness before and my recovery was so fast after the OP that my natural immune system is strong . Thats great but unfortunately cancer doesn’t play by those rules so I am still leaning slightly towards taking immunotherapy. 

  • You're absolutely right.  Cancer (and a lot more besides) doesn't play by those rules. 

  • I think you have to decide between side efects and benefits . Honestly you should take the medication and keep one eye on any unusual simptom If anything its wrong stop. 

  • Thanks very much