How do you know?

good evening lovelies...just reading the different stories as I can’t sleep. I guess we all worry about this, but how do you know if your cancer has your bones or liver? Thank you Nellie xx


  • LMK74LMK74 BrisbaneMember Posts: 749
    I imagine you'd get pain that is persistent that you didn't have before maybe. I think we will always be wondering if some new pain somewhere is the cancer come back. 
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,053
    Good question, but problematic. The only way to know for sure are CT and bone scans. You do not want to be having those unless you have to. You don't know if you have to until something goes wrong. But how wrong and what is the ' something'.

    We just have to trust our instincts, be aware of our bodies and react if something doesn't feel right. When you have been through months of treatment, been poisoned, irradiated and had your hormones reduced to next to nothing it would be more remarkable to feel well, but if you do feel sick(er) or in more pain than usual or start changing colour, trot yourself off to your most trusted medico and talk to them.

    It's a maddening situation to be in. We hope all the palaver has been worth it, but there is always a lingering doubt. Time is the only healer for the anxiety that accompanies cancer. Good luck and I hope what ever doubts you have turn out to be nothing to worry about. Marg xxx
  • TennilleTennille Member Posts: 172
    I was the healthiest I had been for 3 years when I was diagnosed this year with mets to bones (innumerable) and liver. I had no clue and no symptoms. Mine was caught during a CT to check on gallstones. I guess you just need to live your life as normal and be aware of any changes.
  • TonyaMTonyaM Member Posts: 2,530
    I have an annual blood test for various things and if any of them are out of range,my GP sends me for further testing. One year a liver enzyme was slightly elevated so I was sent for scans- all ok. It’s not fool proof but it gives me a little bit of peace.
  • Jude_MJude_M Member Posts: 66
    Like @Tennille I felt really healthy and had no signs or symptoms when I was diagnosed with metastasis 11 years after my initial breast cancer.  I noticed an enlarged supraclavicular (above collar bone) lymph node, went to my GP, had a biopsy, results came back as metastatic breast cancer.  I then had CT scans and bone scans which showed bone and lung metastasis.  After 11 years I had almost stopped worrying about my breast cancer returning - but there are no guarantees with this awful disease, and you need to investigate anything unusual that you notice.
  • onemargieonemargie queenslandMember Posts: 1,189
    What the fuck @Tennille I can’t beliece you didn’t have any symptoms with your Mets! That’s so scary. I have osteo symtoms from the menopause the chemo put me in to and I have blood tests every 3 months so far so good and I hardly ever have to take panadol osteo and don’t have any pain when I’m resting or sleeping and it’s more discomfort than anything and once I’m up and moving I’m fine and no discomfort it’s really only when I sit for a long period so how the fuck are you supposed to know? Like @Zoffiel said it’s not good to have scans all the time too. Margie.xx  
  • HendrixHendrix Member Posts: 224
    @onemargie what do the blood tests show? Well that’s the thing since chemo I feel like my body has aged...if I sit for to long I feel like my body locks up and painful to move for first 5min...I get a twinge in my lower back that wasn’t there’s horrible to feel paranoid :(
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,053
    The blood tests don't actually show cancer cells, they pick up proteins that our body sometimes produces when you have cancer. They are notoriously unreliable as other conditions can also trigger things the tests will pick up. I've had elevated markers when I had the flue. This shit is not helpful.
    Ten years ago they were very popular but less so now--particulary as a diagnostic tool. The tests can be really usful when monitoring people who have active disease as they give an indication about how treatments are working. 
    My onc, bless him, says 'No, no. No blood test. They make everybody crazy.'
  • onemargieonemargie queenslandMember Posts: 1,189
    Hi there @Hendrix it certainly sucks doesn’t it. Just speak to your gp or oncol that’s all I do these days. It’s not good to have scans all the time too as that exposes you to radiation and can increase the chance of cancer too apparently so how the fuck are we supposed to know and when the bloods aren’t a good indicator either I’ve just read. I get especially paranoid now after reading @Tennille had bloody Mets with no symptoms. Margie xx
  • LMK74LMK74 BrisbaneMember Posts: 749
    Cancer is a lottery. You either get it or you don't. Unfortunately for us we all got it. As for mets, well we could drive ourselves bloody crazy worrying about every little pain or niggle. I guess if something doesn't feel right, see your doctor. If mine comes back all through me, so be it. If I sound depressed, I probably am. The last 3 year's have been Crap and having a schizophrenic brother to look after that does nothing all day but smoke and drink coffee and nothing to help me around home is not helping.
  • iserbrowniserbrown Regional VictoriaMember Posts: 2,519
    My mother in law's Mets were detected by blood test not pain. A local here was diagnosed with liver cancer purely by the annual full bloods test.
    It's a sneaky thing. 
    When I was diagnosed with breast cancer I didn't have pain to suggest the recall from Breastscreen would be breast cancer. 

  • primekprimek Broken HillMember Posts: 4,425
    You might find this helpful.

    I guess the reality is that early metstatic disease doesn't cause big issues that we notice. Just keep talking with your onco team. This is why you are followed for 5 years. X
  • onemargieonemargie queenslandMember Posts: 1,189
    Thanks @InkPetal i still have bloods every 3 months it’s wHat my gp recommends. But after reading that article makes me feel even better that I made the decision to have the double mastectomy. Thanks for posting it. I didn’t have any pain when I was diagnosed ether but mine was localised no lymph nodes involved and scans all clear had a lumpy boob as well too so didn’t feel any different to me 
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