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Rising tumour markers, and advice needed regarding breast care nurse

Jacqui64Jacqui64 Member Posts: 16
edited April 9 in Metastatic breast cancer
I am now 71/2 months along since my diagnosis, and it's been one hell of a ride.  I was started on Ribociclin but it affected my liver so I had to stop that, then I was on Palbociclin which last month showed a positive response to treatment with visibility of the tumours basically undetected.  Now my blood tests have shown a slight increase in the tumour marker, from 86 to 92, instead of going down.  So now I have to have ct scans, MRI's, and a possible pet scan to see what's going on.  So here comes the anxiety again, wondering what's happening.  I was told that it would be very beneficial to have a breast care nurse that is trained in all of this, and who I can contact when it's all feeling overwhelming.  My oncologist works out of the Olivia Newton John centre, so I would preferably want a nurse who works from there.  Does anyone know who I can contact about this, and has anyone been through something similar that could possibly reassure me about my situation.  You were all so wonderful and so helpful when I was first diagnosed, and I'm hoping I can ask for your help one more time.  

Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 5,213
    edited April 8
    Terrific that the tumours are basically undetected ..... Try not to panic @Jacqui64, difficult tho it is.  I was scared Shitless when I started seeing the massive rise in my hubby’s markers (below.)

    Check out what is an ‘acceptable rise’ with your Onc.  

    Which makers are you having checked?  My Onc has told us not to worry too much about the markers ‘as such’ as they are used as an ‘indication’ ... as there can be a fairly large ‘swing’ before they get really concerned. 

    My husband is having 2 markers checked, CEA and CA19.9 ... and the CEA was going up 4 points per test (it used to be 1.5 a few years ago) then from Jan, it was 18, Feb it was 22 and March 25 ... this week it went down to 14 - so happy with that.  The CA19.9 used to be 7 ... then 154 in Jan, 214 in Feb,  302 in March, and this week, it only went up 10 points to 312 ... so VERY happy with that.  He will have another PET Scan after his next treatment in 3 weeks to compare with the January one.

    Our Onc (she is my Onc as well as hubby’s) is very happy with how he is going just, after just 3 treatments, given that he is Stage 4.

    I hope you can connect with a good Onc BC Nurse for your  own peace of mind - your Onc is already in a terrific Cancer Centre, so will have access to all the clinical trial results, etc and is probably discussing your treatment with fellow Oncs as well ... for the best possible results for you. Xx 

    take deep breaths, take one day at a time and keep as busy as you can in the lead up to the scans and wishing you all the best with the scans  xx 
  • Giovanna_BCNAGiovanna_BCNA Member Posts: 1,848
    Hello @Jacqui64

    Great that you have reached out for some support in our online community.  Sounds like you had a tough start with the  Ribociclib initially and that the Palbociclib has produced a great response with your tumours now undetectable.  As you would know, tumour markers can be used to monitor patients during treatment along with other clinical signs and investigations.  Your medical oncologist would be able to provide some guidance as to what this rise may mean in your situation.  Please check in with them if you are still worried.

    I agree that it would be good for you to link in with a breast care nurse at your treating centre.  I have checked the McGrath website and Elizabeth Foster is one of the BCN at the ONJ Cancer Centre at Austin.  Her email is [email protected] or she can be contacted on 9496 3715.  The scan anxiety is very real, do what works for you with regards to helping manage your anxiety, keeping busy or distracted, company of friends or family or even some gentle exercise such as walking.  Take care of you and all the best with your upcoming scans.
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 196
    Hi @Jacqui64, Don't worry too much about your markers as they do not always give an indication of what is going on. I have CA153 measured every blood test and I never really look at it because it does not accurately reflect active cancer in me. Some people can rely on it but others not. So great that you seem to be responding to Palbociclib. Hoping that your scans will confirm this and the slight increase in your marker is just an anomaly.
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