Stage 4- can you change oncologist?

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Hi.  So I found out I have stage 4 bowel that has spread to my liver and my left lung. It has completely upended my life. I am about to start my 2nd round of chemo tomorrow. They've said I'm to have 6 rounds and then I'll have another scan to see if it is working and then make a plan from there.  I am all over the place emotionally. Sometimes I think I'm coping but mostly I struggle to know what to do or to consider the future. I met with my oncologist for my PAC and I really don't like him. He speaks as if I'm wasting their time and keeps saying it's obvious that I'm ambivalent to chemo.  I don't think I am. I want to live, I'm not ready to just give up. I'm not naive enough to think I'll be cured, but surely it's worth at least trying? Then I wonder if Ivem not accepting the seriousness and perhaps they don't expect it to work. My friends want me to change oncologist but is this something I can do?  Would that cause delays in my treatment?  Why does life have to be so hard?

  • Hi  

    I hear you and had similar worries initially with my mum . I wanted someone proactive. To be honest she got that as a change of oncologist came about and she was very on the ball .

    However saying all that it is pretty universal in a stage for setting, with a few exceptions , for most stage 4 patients to go straight to chemo . I wrestled with that as I felt surgery was the more important tool in the box . However looking back I now see the role Chemotherapy played . It gave the opportunity to not only shrink the existing spread but reign in any further micro disease  and achieve stability which is a big plus . 

    My mum has been at this for a long time and all scans do go back to the MDT meeting to see if there is any other Avenue that is appropriate. 

    What I think might help you is the knowledge that you can have a second opinion at any point in the process . Our approach was always to see what chemo achieved first then be willing to ask appropriate and considered questions from the experts in each field if required . 

    The next point is to know who to approach for a consultation. You might like to join Bowel cancer U.K. as they have a FB group and collectively you can keep an eye who is reporting good care but also let’s you keep a finger on the pulse on treatment approaches .

    I found it incredibly helpful to have that knowledge as I had my ducks in a row .

    Chemo was absolutely the game changer for mum and it has been interesting to see it now being used in maintenance settings for years with people . My mum did make it to surgery a few times with the help of chemo . I was also happy about that .

    My mum’s last oncologist was so balanced I ended up trusting her completely. 

    However you do still have lots of ways to ensure you are getting the best approach. 
    Bowel cancer U.K. also has a good information leaflet on all the different approaches to treating a spread . Have you read it ? Happy to link it in for you .

    For now I wish you significant shrinkage . 
    Court 

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  • https://www.macmillan.org.uk/cancer-information-and-support/treatment/preparing-for-treatment/physical-activity-and-cancer#:~:text=Regular%20activity%20will%20reduce%20the,specialist%20nurse%2C%20physiotherapist%20or%20GP.

    You might also like to think about this . Staying active and engaged with life as always been our focus . 
    Whilst my mum is not participating in many times of exercise now even at 81 she gets out most days at a level she can access .

    Keeps the blood circulating. I do believe chemo has given her the opportunity along with other approaches to become an older lady . 
    Good on you for pushing forward . 

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  • Thank you for these, that's really helpful.  And thank you for the links. I think over the past while I've just been in a daze. Reading up on things and being a bit more pro-active  is something I'd like to/need to do. 

  • Take your time as there is no rush but when you are ready it can be really reassuring to be able to advocate for yourself if required. 

    My mum actually left that part to me and that’s where forums can be really helpful . She preferred to focus on staying well and listening to her body . Resting when needed etc .

    Its very early days for you and right now you can’t imagine it getting easier to process but it’s amazing with time how you learn to live a good life between scans .

    Hope treatment is being kind to you .

    Ask anything you like . We are always around .

    take care ,

    Court 

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