Newly Diagnosed

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Hey all,

Recently been diagnosed with Stage 4 bowel cancer that has spread to the liver.  It was missed by my GP 2 years back when i first went to them about blood in stool and sadly has now spread.  The last 5-6 weeks since going for a colonoscopy to check for IBS and being told they had found a large growth have been awful and its taken some time to come to terms with things, especially on hearing it had spread.

My chemo is due to start in 2 weeks and I am doing a 8 cycle of Xelox.  Not sure what to expect except a very tough 6months.  My liver surgeon has said they think i am suitable for liver surgery post chemo so long as the rescan is positive, but I can't get excited because I just fear this will change.  Its just horrible times, yet i realise I am more lucky than others.  Its hard to get around that daily fear that is could be spreading elsewhere in the body as well.

With chemo about to start, the fear turns to finances and sickness.  I am lucky to get 6 months full pay from work but i have already used some up.  With a young family (6 and 9), its a worry I could do without.

I haven't even started worrying about the second possible op and removal of my anus and a coloscopy bag.  A small price to pay but I know it will terrify me.

  • Sending you all the ((hugs)) in the world. You are in the right place to get info, someone will be along soon. I am fortunate to not be in your position. 

  • Hi I’m sorry to hear the situation you are in. I’ve just heard today my cancer had returned after 10 years so although different circumstances mines is stage 4 as well. I’m meeting with oncology on Friday. Just take one day at a time that’s my plan at the moment. Big hugs your way. 

    Cath

  • I’m so very sorry RS1981. At times like this, our minds can work overtime and that drains us emotionally. There are many members here who’ve had a stage 4 diagnosis and are here to tell their stories. So there is always hope for tomorrow and enough in each day to address if we can focus. It takes practice, and you might find mindfulness techniques helpful. 

    Every blessing
    Wellspring
  • Hi  and a warm welcome to the board. Yes it’s a huge shock but it sounds like you have a treatment plan in place which is good news. The next 12 months will be tough but break it down into stages and focus on each stage at a time. 
    Chemo can be tough but very effective. I’ve enclosed a link to a post that we did about what to expect and how to manage some of the side effects - it may look a bit scary and it’s hard to predict what side effects you may or may not suffer from as everyone reacts differently to chemo.

    https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/221768/chemo-care-top-tips--

    Please give the support desk a ring to discuss your financial worries with them as they may be able to advise you about any benefits you might be entitled to - the number is under my name at the bottom. 
    Try to put the op to the back of your mind for now - there’s lots of people on here had this op and there’s lots of advice about colostomy bags. 
    If you type ‘liver’ in the search box at the top of the screen then it will bring up previous posts from people who’ve had liver resections.

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thanks Wellspring!  I do need to look at some different techniques and exercises to help me through the coming months for sure so thanks for the info Slight smile

  • I was diagnosed many months back with bowel cancer, and as you say it must be a dreadful time for you also.  I have been through radio/chemotherapy and now waiting for an op.  It has been a long wait and seems never ending and our minds seem to play havoc with us at these times.  Perhaps once you have started the chemo and can see something happening that will help.  It sounds as though the liver surgeon sounds pretty positive that something can be done also.  I feel these days if they know they cannot do anything they will gently tell you, but in your case it looks like they can do something, so hold onto that, and take each day as it comes.  I must be honest I do find some days better than others as I am sure you do.

    Try not to worry about finances, I am sure Social Services will be able to help out at this difficult time for you.  I would also try not to worry about having a colostomy bag, (I think I will have to have one of those), I have several friends who have them and tell me they are no problem whatsoever, you can live a full active life wearing one.  

    I know it is awful not knowing what the future holds but there is nothing we can do but take each day as it comes, and hopefully things will get better for you and give you more peace of mind.

    Kind Regards

      

  • Welcome to the forum .

    If you click on my user name you can read how my mum navigated her diagnosis of a spread to the liver . I am so sorry you went and highlighted your concerns but not followed through with .

    Please so be encouraged that they think liver surgery is a possibility before chemotherapy has even started . They are not inclined to say too much before they see the results of chemotherapy so I would hold onto that . Write it down and reflect on these very words as you go through treatment .

    You might like to have a look at Macmillan’s information on exercise. If someone can find the link for me  please @ Kareno62. If possible .

    Take care ,

    Court 

    Helpline Number 0808 808 0000

  • Thanks Karen.  The link is helpful as just trying to prepare myself for that first session in regards what to take with me and what to have for afterwards.  Thanks for your reply.