I’m in the Freeman and my oncologist does not believe in giving out numbers as he feels it could add to worries. He and the senior Onco both believe that there are many other factors to be taken into consideration so chasing numbers is counter productive if everything else is ok. As recent research has shown , stress does play a big part in our well being, which is why we are offered mindfulness courses, holistic treatments and access to psychologists. I know my Onco has my well-being at the heart of everything he does , and for me the numbers would be meaningless. If I feel well, can be active, sleep well, and CT scans are good then I can live without numbers. As Nicky says, your Onco is following your progress and carefully watching your results. They are not the same for anyone else because we are all unique in our response to the disease and the meds. X
I haven’t had tumour markers taken during my 11 years living with mets but have read many things about them on here so I thought I’d add what I’ve learnt. There doesn’t seem to be a definite starting number for everyone as that can vary depending on the person and from what I can understand even the laboratory the tests are run in. Obviously a very high number will indicate a lot of activity. What the oncologists look for is a trend in YOUR results. So even if your own current reading is higher than someone else’s it doesn’t necessarily mean your cancer is more active. I have read of ladies with tumour markers in the 100’s or even high 100’s. The trend tends to be established at the beginning of treatment so that reading is used but you can start having them taken some time after your diagnosis of secondaries as the trend will still be monitored. The reason they are not used for all secondary BC ladies is that not everyone’s markers reflect what’s happening so they can’t be relied on as a diagnosis tool by all oncologists.
Funnily enough although I said I hadn’t had them taken before I did notice on my oncologists notes the last time I saw him a score for one of the markers so I am going to ask him about that!
I hope that helps but someone with more knowledge of them, or whose oncologist has explained it better to them than I have on here will be able to add more.
littlep, I'm going to tag along with you on your question. I just received my CA 15-3 results while awaiting scheduling of a PET scan to further investigate bone/lung met possibility. My score was 58. I don't know how this rates on a "not too bad for a starting point" or "up there but might drop once treatment starts". Anyone understand the numbers. IDC grade 1, stage 2 before they saw MRI/CT suspicious bone and lung pictures.
I went to pick up a print out of blood test results today from the nurse, the tumour marked results weren't back so she started to write the ones from 2 weeks ago on, then realised the new ones were back and printed them instead..... I noticed that the CEA had gone up from 3.2 to 4.7 in 2 weeks, that seems like a lot? My question is; is fluctuation normal?