Stage 4 bowel cancer

Sue14

Just been told I am no longer treatable, what should I be asking now?

Since being diagnosed two and a half years ago with stage 4 bowel cancer I have had a bowel resection, liver resection, ablation to liver and 2 rounds of chemo but oncologist has now said that I am no longer treatable. I now have nodules in both lungs and 3 lesions in my liver again. This is so hard to take in and I’m finding it really difficult to come to terms with the fact that I am now on palliative care as I only have a few months left any advise would be really appreciated regarding questions for my oncologist, just feel as if my brains fuddled with all this information.

Lirio345

Good morning @Sue14, I am so sorry that you find yourself in this situation, no wonder your head is feeling. I am curious about the exact chemo you have received already and wonder if a second opinion might suggest further treatment. If you can bear to, can you share more details of the chemo. Take very good care, Kim :x::x:

Sasa

Hi @Sue14 I am so sorry to hear you are struggling, and we all do, so no apologies needed! Please can you jot a few more details down so we can help?

Do you mean ‘untreatable ‘ as in no more chemo? Or no more surgery? The term ‘palliative care’ is so unhelpful isn’t it? I presume you are having some sort of treatment?

Take care,

Sarah :x:

Baxter2

Good morning @Sue14

I'd just like to echo what @Lirio345 and @Sasa have said. Forgive me if I'm wrong but I wonder if you are perhaps confusing 'no treatment' with 'not curable'? For example, my cancer is not curable but treatable on continuous chemotherapy. It's actually called palliative chemo.....a term I detest now!! I'd seek another president opinion now especially if your oncologist is stopping treatment. I was told incurable jan 2016 and still very much alive! Please let us know how this goes if you can.

Sending you love

Karen💛💜💙❤️💚

terri m

Keep on carrying on @Sue14 . ignore what you hear listen to all the other stage 4 messages.. Get that 2nd opinion. Lots iof love & take each day has it comes.. Here & now xx💝😘

GD62

Hello @Sue14

Sorry to read your post and as before get a second opinion...... hugs :x::x::x:

ElaineG

Sorry to read this @Sue14 but don’t give up - definitely get a second opinion.....❤️

Sue14

Hi everybody and thank you so much for replying. I was told just before Christmas that the cancer was no longer curable but still treatable, I then had 12 weeks of Folfiri chemo and then another CT scan, the scan showed that the chemo hadn’t worked and the tumours had in fact grown while I was on chemo. My oncologist then stopped my chemo and due to the position of the tumours in my liver told me that ablation or surgery was no longer an option either, I was then told that there was no more treatment which would help and that I had a few months left so they felt I should enjoy the time I have left with my family. I am now under the palliative care community team who help keep my pain under control, after all I have been through I find it really hard to accept that I am nearing end of life and feel I should be doing something to give me more time if possible. I must say that my oncologist has been brilliant as have all the team but I’m not ready to give up the fight if that makes sense........

determinedjoan

Makes complete sense . With u on this. V best of luck with 2nd opinion; pls let us know how u get on.
Keep well & keep fighting! Love 💗 & hugs 🤗 :x:

Sue14

Thank you @determinedjoan I will keep you all informed when I get my second opinion :x:

jj

@Sue14 do get a second opinion. Places like Christie’s will be best bet.
Take care, keep fighting the cancer with everything you got. Stay positive, that really helps. Will cover you in my prayers
Regards

Sue14

Thank you all for the advise and kind words ...... it’s so nice to know that there are lovely people here who are all in a similar situation and know what we are all going through :x::x::x:

farahat

glass of fresh fruit like red grapes apple carrot and orange with one spoon of tumeric with some black pepper drink it every day will give boost to your body and help repair your immune system which has been damage by chemo i am six year stage 4 survival i start juicing the day I was diagnosed in 2013 i truly believe it has helped me only think after my singnle spot on liver which was removed by surgery and two small spot on lungs which were abilated I was never offer chemo and after my colon resection in 2013 i was told no chemo i had liver and lung spot 3 year ago so far all clear

farahat

fresh fruit juice

Kate M

@Sue14 Apologies for very late reply to your post. I am in the same position as you my chemo being stopped last week and having just months to live. This disease is so rubbish. I have asked my GP for a second opinion and agree with everyone above that it is the way forward. Glad you have the support of the palliative care team - in my area they only offer counselling which I am having privately anyway although I have been referred to Macmillan. Take one day at a time and worry about tomorrow when it comes. Sending positive thoughts. KateM :x::x:

Polly68

I would definitely ask for a second opinion. I had progression in my lungs on FOLFOX and my oncologist wanted me on Lonsurf. I knew I’d had a good response before to FOLFIRI so insisted they try that again. They begrudgingly agreed and again I have had a response. When you are diagnosed you are put on the NHS pathway of treatment, which is the same for everyone - but we are not statistics. If you’ve had a good response to another chemo in the past tackle them on that. Have they considered 3rd line Lonsurf? Are they looking into trials? I have learnt we have to be our own advocates. Good luck and sending hugs :x::x::x::x: