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lesleyb's avatar
lesleyb
Member
9 years ago

Tumour markers not working for me

Well my tm is not working for me.  Dx nearly two years ago and have only had Arimidex and Denosumab.  I also have a benign tumour in my salivary gland which is how they found the progression into my cervical spine and in my humerus (left arm).  The progression in my spine especially the C2 and C4 had progressed so far that I am not able to have surgery or stereotactic radiotherapy to reduce it immeasurably.  I can have normal RT but it is not as effective.  During the last 2 years my TM's have hovered between 30 and 40, up and down, up and down.  I felt ok except for the tiredness during the last 6 months because the cancer was progressing and the Arimidex was no longer working.  I knew something wasn't right because of the fatigue which is common with cancer progression.   But I trusted my onc. to be on the ball.  Do your research everyone.  Oncologists just cannot keep up with all the changes in treatments.  I have found so many things due to my own research that my onc did not know e.g. my diagnosis had changed from Lobular to Ductal but it wasn't picked up during my second biopsy when I was diagnosed with mets, Leterozole is now on the PBS to name a couple

I had not had a bone scan since February as my onc didn't think I needed one as my TM's were good and I wasn't feeling any pain.

I will be starting Tamoxifen or a new trial based at Peter Mac soon.

So i guess what I am saying is do not rely solely on your Tumour Markers.  If they are stable for a long length of time and you are feeling more fatigued than usual, ask your onc to order a scan to check for progression.  These TM's work for most people but there are a few like me that cannot rely on it.

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  • melclarity's avatar
    melclarity
    Member
    9 years ago
    @lrb_03 

    Oh I understand it a little more, although I was Stage 3 aggressive IDC my 2nd diagnosis last year?? 

    @lesleyb 

    Goodness was interesting reading your story. I have severe lumbar spine pain since last year, but a scan showed I have osteoporosis in it and my neck thanks to Chemo. Fatigue I honestly put down to side effects of Chemo. Really makes you think..

    Sam, I too have friends who have Her2 Breast Cancer, I'm ER+ only, but they said particularly because of their diagnosis they chose the path of Chemo. Very individual decision for sure.

    Melinda xo
  • lesleyb's avatar
    lesleyb
    Member
    9 years ago
    Oh and by the way, I had my gall bladder out about 30 years ago and have never changed my diet because of it.  I feel fine in that area
  • lesleyb's avatar
    lesleyb
    Member
    9 years ago
    Sam, i don't think TM's work for early stage BC which is what you have.   Your oncologist is the best person to aim these questions at.

    .  I waited 9 years for my cancer to become stage 1V after having treatment for Stage 2B IDC.  As far as knowing when it has metastasized, listen to your body.  If you notice any unusual  and severe pain in your bones (as was the case with me) then you should bring it up with your onc.  I also noticed I was extremely tired before I was DX.  Others who progressed straight to their organs may have different signs.  Mine hasn't gone that far yet.

    This disease is very sneaky, so be vigilant, eat a healthy diet, lots of exercise and take your Aromatose inhibitors for as long as you can.  Don't stop after 5 years as was the standard after I was diagnosed the first time around.  It is a great protector for those who have Hormone positive BC.

    As I said in my previous post, TM's are not very  reliable in many people.

    i know your TM's can rise a little if you have an infection but I have never heard of it changing due to high cholesterol.  But I am not a GP.

    Take a deep breath, relax, move forward with your life.  Don't worry about progression to Stage 1V.  There's not a lot you can do to prevent it.  If you are one of the 30% who will progress, then that is very unfortunate but it may not even happen.  You have a 70% chance of not progressing. 

    Just forward your questions on to your onc next time you visit.
  • Sam09's avatar
    Sam09
    Member
    9 years ago
    I am wondering if there is any correlation between high cholesterol and elevating tumor markers. I had a pet scan 11 weeks ago that was clear however my CA 15 tumor markers have gone from 30 to 46 to 89 to 130 in 10 weeks. Strangely I have elevated cholesterol to 6.9 as well. I am a vegetarian health nut that is as fit as I am humanely possible to be and I can only put it down that my surgeon removed my Gall Bladder when I was having surgery for another matter in 2010. For future prevention he said when HELLO I didnt eat fat and there was no future prevention from gall stones grrrrrrr. I actually wanted to keep my gallbladder and would have been happy to do so..
    So I am hoping the elevating markers are from the high cholesterol and I have had to be even stricter with my diet now no dairy at all only food from the ground and all organic. But...... I am still scared stiff, because of the elevating TM's my oncologist wanted to do another CT scan full body and a bone scan. But I have put these off and her appointment a few weeks to see if the alkaline diet brings down the cholesterol and tumor markers and if this is the case wont have the tests as I worry about radiation in my body and I have had all these tests in the past few months since diagnosis.
    What are the symptoms of Breast Cancer spreading, I have her 2 stage 1 invasive ductal carcinoma and declined chemo rad and herceptin,I may have no choice one day sadly. Every pain and headache I stress greatly. How does one live with the stress and terror of this disease and can we ever be happy again.....
  • Terrirocks's avatar
    Terrirocks
    Member
    9 years ago
    And I have never had any tumour markers but I still have stage 4 tumours.
  • lrb_03's avatar
    lrb_03
    Member
    9 years ago
    My understanding with tumour markers is that they aren't terribly reliable, particularly with stage 1& 2 bc. Used more, and a little more reliable with stage iv, but still not infallible.  Rarely done for early stage bc, so that might explain why you haven't had them done, Mel, even after a recurrence. 
    Lesley, thanks for raising the subject.
    Take care, Lyn
  • melclarity's avatar
    melclarity
    Member
    9 years ago
    I have heard of tumor markers, but how do they test that? Ive never had that done so wouldnt even know? I have extreme fatigue but I put it down to side effects of chemo still and being a single parent, as in just running on empty. My bone density scan was terrible, with osteoporsis in my lumbar and neck, so am on Prolia injections twice a year. 
  • primek's avatar
    primek
    Member
    9 years ago
    So sorry about what has happened. Wonder if the new trial will include fosamax, the osteoporosis medication also. I believe the 2 together can stop bone mets. Hope all goes well.