Stage IV Mets to liver and lung - UK

KeepingHope
KeepingHope Member Posts: 1
edited September 2019 in Colorectal Cancer #1

please can someone give me some hope? My loved one has been told he has colon cancer with Mets to liver and lung. Had a total blockage tumor removed 2.5 weeks ago. We have had nothing since - no oncologist appointment. How long does this normally take? Has anyone managed to find a way to live longer than we expect we will be told? Willing to try anything. 

 

Edited - CEA was in high 80’s - what does this even mean?

Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited September 2019 #2
    Welcome to the forum

    I am sorry to welcome you here, it is not the forum anyone wants to be a part of. 

    Here is some hope for you. I am Stage IV and surviving FIVE years NED (no evidence of disease).  There are others on the forum - some who just pop in every now and again - who are also Stage IV and surviving. I am sure they will be along at some point to share their support. 

    I have found across the years, that people try all sorts of things becasue at the end of the day, I believe (as in me persoanally) that each has to find what works for them.  

    Juicing, exercise, yoga, meditation, supplements, paleo, vegetarian, vegan, I've met people on the forum who swear by one or the other or all of these and other ways to survive. 

    I believe what has helped me personally is having a positive, happy outlook, meditation, yoga, walking and I'm constantly working of TRYING to eat healthy - haven't quite got there yet. 

    I consider it a work in progress, and I would never, ever say I am cured or Cancer free. For me, I am surviving Cancer but not a Cancer survivor.  

    Each to his own though. I firmly believe the Cancer patient has to find what works for them and then run with it like Hell is at your heels.

    You also have to be proactive. If you don't think things are moving fast enough then do something about it. Call and make the appointment with an Oncologist - time is of the essence. Cancer is not waiting and neither should you (talking about your loved one here, of course). 

    Stick with us and we will help you and your loved one through this. 

    Edited to add: CEA is just a marker which may or may not be accurate.  A normal CEA is below 3.0 so 80 is up there. But, there are things that mess with the CEA, like surgery, chemo, having a bad day. While you need to be aware of it, don't let it become a fixation - I did that. If you start worrying, then the body will pick up on it. As hard as it is, having a calm outlook really helps. Cancer feed on certain things, and stress is one of them.  So yes, CEA, keep an eye on it, but don't fret over it. Take it one day at a time. 

    Tru

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #3
    So sorry to hear this news.

    I am not sure how things work in the UK with the NHS--my personal experience was that I had surgery first, and while recuperating in the hospital met with oncologists and set up appointment to meet with him and start chemo shortly after surgery. I htink there is concern that surgery can "liberate" cancer cells and the sooner you commence chemo if you choose the better. He defintiely needs to heal from the surgery though before beginning the harsh chemo in my opinion. Praying for a fast recovery and good care for your loved one!

     

  • nuc
    nuc Member Posts: 44 Member
    #4
    Definitely stay on top of

    Definitely stay on top of your doctor(s) in regards to the next step.  Once the healing is sufficient from the surgery, the chemo. and radiation will start.  But make sure you haven't fallen through the cracks, you must advocate for yourself during this process. 

     

    Adam

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