lesleyb
9 years agoMember
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.
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.