Not operable?

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Hi, I had a meeting withy Doctor on Monday after 6 sessions of chemotherapy. He said the secondary liver legions have gotten worse and is now not operable. 

I don't know what that means going ahead. 

I have to wait for results of an MRI scan to see if the primary tumor in my lower bowel area is operable before they consider liver ablation. 

I only had 3 small legions in one side of my liver so I don't know why it isn't operable. 

Has anyone been told theirs is not operable and have any idea what the next step might be? 

I'm pretty scared that the doctor meant I'm out of options already after just 5 months of one type of chemo. 

Thank you, 

Neil

  • Hi  

    Firstly I am sorry to hear this but a couple of things come to mind . Do you know the size of the liver mets , which segments they are on and are the abutting anything that is preventing surgery ? 

    Secondly and probably more importantly has this decision been made at a centre of excellence for the liver ? There are around seven in the U.K. . You can identify them as they also do liver transplants and easily googled . If not a second opinion can be obtained. It’s not even that expensive to do that privately as one previous member has done here . Just make sure the surgeon is from a centre of excellence. We have had people who a second opinion brought other options to the surface. I am not saying that’s your situation as I don’t know why they made that surgical decision but you may want to know . Even understanding is important as the liver surgeons explain everything and we found that helpful .

    Also ablation is also a good technique to control spread so if that’s still an option it may well do a good job . We have had people here use it .

    To understand your treatment options better you might like to know what your cell type is as there are treatments that are suitable for some and not for others .

    Most people can get some form of second line treatment so don’t give up hope just yet .

    It sounds to me you have some information but still have other questions . You can phone your specialists nurse and ask them to go over the information and options again . You can also phone our helpline to get them to go over your options .

    Take care ,

    Court 

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  • Thank you for this information Court, there's a lot to go through, checking my latest paperwork, it does not say the size of the liver lesions, just small volume, potentially treatable after chemotherapy. But now I've had chemotherapy that's changed to increase in size of liver metastasis, not for surgery. 

    I asked why not for surgery and many other questions but my doctor wouldn't answer because he said he's not a surgeon. Very frustrating. 

    I'll look into liver centres if excellence the meantime while waiting for the next meeting. 

    Thank you 

  • I honestly don’t understand why they can’t pass on the surgeons reasoning . That seems so unfair. Your GP might have the sizes of your liver spread and the MDT findings . 
    My mum had to travel to get a liver resection . She had 73% removed at a centre of excellence.

    Plenty of time to get your questions in order .

    Have a look at  story .

    Take care ,

    Court 

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    Helpline Number 0808 808 0000

  • Hi  ,

    Sorry to hear this, it sounds like a further explanation is needed.  Your Onc isn't a surgeon but surely can relay what the surgeons opinion is!  

    I agree with  (thanks for the tag, hope you are well!) and would seek a second opinion.  I'm not sure where you are based but when I was deemed inoperable in 2021 I had a private consultation with Peter Lodge in Leeds (the cost was around £350) and a second opinion (NHS) with Merv Rees in Basingstoke.  Both surgeons said an op was possible.  

    However the criteria is usually that you have stability or shrinkage with chemo.  Have you got a plan going forward?  Your Onc may put you on a second line of chemo which could prove to be effective.  It may also help to find out your biomarkers, any mutations, KRAS or BRAF as this could influence treatment options.

    Ablation is also a good option to get the liver lesions under control.

    Think you def need to have further discussions with your Oncologist though to help understand the surgical decision.  

    Good luck and keep us updated.

    Michelle

  • Thanks Michelle. I'm based in Warrington and under Clatterbridge cancer hospital in Liverpool.

    Unfortunately it seems three small legions in my liver have gotten bigger while I was having 6 sessions of oxyplatin chemo and tablets. So that's now turned into not operable and apparently my primary was not operable to begin with. Which I didn't know. But.... After the meeting with the oncologist on Monday just gone, despite being told it's inoperable, he said I need another MRI (which I had this Thursday just gone) to check on the primary to see if ablation is an option for the liver. So I'm angry and confused as I'm thinking the liver legions were operable and now aren't. My minds upside down. I'm angry with no one to be angry with and nothing I can do. 

    I have asked for a second opinion and have been looking into liver specialists but the people I need to speak to aren't in over the weekend apparently. 

    I'm just a frustrated angry upset mess at the moment. Having people like yourself to help and support is a massive help though. At the same time I wish you hadn't been through this yourself. I don't wish anyone to be in this club.

    I hope you're coping well yourself

  • Our helpline is available though and there to speak to for exactly this type of situation .

    Sometimes even just to separate your thoughts and draw up an action plan helps .

    Knowing who to consult with matters . I always think consulting outwith the area you live in is more objective. They potentially work with each other otherwise .

    0808 808 0000

    Take care ,

    Court 

    Community Champion Badge

    Helpline Number 0808 808 0000

  • It really is a rubbish situation, made worse at the weekend as you can't get hold of anyone or move forward. 

    I would have thought your Onc would put you on a second line of chemo.  You've started on Capox so usually the next one to try would folfiri, which is irinotecan instead of oxaliplatin.  But, this would prob depend on any mutations you may have.  It does sometimes happen that people have progression on one chemo but then another one can work to stabilise or shrink.  

    Hopefully you'll get some answers next week and a plan moving forward.  

    I'm coping well thanks, diagnosed 2020 and had 3 ops, radiotherapy and loads of chemo!  It's def a club nobody wants to be in and I'm still sometimes in disbelief that it's happening!