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 . 

  • What does she mean by not having the ‘good stuff’? Seems like a bit of black mail to me or am I reading it wrongly. 

  • Immunotherapy treatments that are available I believe . She said that if I was on it now to stop reoccurrence and the cancer returns then I would not be able to have the treatments that I would get if if the cancer had returned whilst I was having no treatments. 

  • It’s a bit chicken and egg isn’t it. See what Candysmum or Mmum say Fingers crossed

  • Erm....thanks Cilla for passing the ball over....but I'm no expert!

    I can't give you medical advice Phil, just my thoughts about your choices.

    If you choose not to have any treatment now, but the cancer returns within say one year, you'll forever be wondering if you'd made the wrong decision. And kicking yourself....

    If you say yes to the treatment, but the cancer returns within one year, you'll have to stop taking that treatment and transfer to a different treatment...

    If you choose to say no to the treatment, but 'watch and wait', you can have treatment in future if the cancer returns.

    The only advice I have is from my own experience of immunotherapy...and I did not have surgery first. Also, my cancer was very advanced and to a certain extent, I think I was used as an experiment, to see just what Novilumab can tackle. 

    Most people on immunotherapy don't get side effects, and feel OK whilst they're having it ( said by the nurses to me at the treatment clinic). It is much less toxic than chemo drugs.

    The drawback with immunotherapy is that it works by encouraging your immune system to recognise cancer cells and kill them. That's great! However, it can cause the immune system to become overactive, and also attack healthy organs or other systems. Sometimes, these side effects are permanent, and will not improve, even if you stop taking the drug. Once you have been given the drug, it cannot be 'switched off'. 

    In my case, I had 4 sessions of the drug combo Ipi/Nivo, with absolutely no side effects, and felt really well. Then, over a period of 5 days, I became increasingly unwell. On admission to hospital, it was found that my immune system had attacked my pituitary gland, which caused permanent damage. It now does not communicate with my adrenal glands, so they don't work. I therefore live on steroids....which isn't easy, but manageable. This side effect is so rare that it was not listed on the list of side effects I was given to read, before I consented to the treatment. Nor was the next side effect, also very rare, that I had a few months later, when my immune system 'ate' the platelets in my blood. I'm not regretful....and the treatment did actually work, and I'm still here to tell the tale!

    I'm not telling you this to scare you! Just to be aware that you need to weigh up the advantages and disadvantages of immunotherapy very carefully.  

    From reading your previous posts Phil, you physically recovered quickly and well from your kidney surgery. Your surgeons were confident that all the cancer had been removed. So although you may have a Liebovich score of 7, you are now cancer-free. You can walk away from this cancer experience now, and enjoy living your life.

    You have said in recent posts though that you have been struggling a bit with the 'mental' aspects of your cancer experience. How do you think you will manage the stress and uncertainty of having treatment? Will you feel more confident, or will it make you scared? Do you want to cope with having treatment? or trust that the cancer won't come back?

    Whilst you are deciding what you want to do, I would suggest you focus on YOU, and what you feel is the best thing for you, and not worry about what you think the oncologist wants you to do! They are bound to 'sit on the fence', as they cannot coerce you to consent to stuff.

    I'm sure other people in this forum will respond to your post too, and also offer their advice and thoughts. None of us are qualified to give medical advice...but just to be there for you, and support you whatever you decide to do.

    In your situation, there really aren't any right or wrong answers!

    I'm not going to ever tell you or anyone else what to do....but do remember that you have successfully carried yourself through a horrible diagnosis, a major surgery and a recovery period....you are stronger than you think!!

    You have plenty of time to chew all this over..

    hugs Candysmum

  • Thankyou very much for your kind words and astute thoughts .  I’m 50 50 at the moment but will make my mind up within the next couple weeks . I am still in a position where I have not had one days illness in my whole life ‘ well not that I could feel anyway’ , so it will feel strange to take immunotherapy which could make me ill in order to keep me well . It’s a tough call but one I have to make and I am aware I am in a better position than some . I’m away with wife, kids and foster kids for a few days tomorrow so will relax and think some more on my return . Thanks again x

  • Enjoy your break Phil! Hope you can find somewhere with decent weather!

  • Hi Phil. My oncologist said that if I got a recurrence, they would take me off the Pembro and I would got on to some tablets instead - she didn't give the name of the specific drug. It is hard when they tell you about the serious side effects that are possible, you feel like you're taking a gamble by having the drug! I just felt ) I may be repeating myself here, from a previous post - but I just felt I had to do the thing that would give me more chance of no recurrence, however small that might be. I'm pretty sure most medical professionals go for whatever treatments are available, which I think says something.. I don't think your doctor is veering to either option but is being genuinely neutral and I wouldn't be swayed by the number of people who don't take up the offer. But it is an individual decision as everyone is saying. Just go with what you feel most comfortable with. Enjoy your break and try and forget about it all for a bit.

  • Thanks ye I’m going to have a nice  few days and make a decision later . All the best and I hope you are well 

  • I'm good, thanks for asking.