Just realised I have never understood all these 4.5 years, where to look for the results for my cancer markers, what they are call in the blood test results and how to read them myself.
I get sent, through an app, all my results every month after my blood test, and have to speak to my oncologist to see if it’s okay for me to resume my Ibrance cycle or not, taking my neutrophils into account. But I have to ask her every month how my Cancer markers are. I just realised I don’t know the name for this test. You all mention CA and some other things about your markers, but I’d love to have more knowledge and independence around knowing what’s going on with my own body, to read this myself.
I’ll send a photo of a sample of the app, here.
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Timtam56
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I don't know if this helps you at all but this is how mine is listed in my results. (I don't typically get tested for 3 types, this is just an example). So for you it might be detailed under the link that says CA, MG, Phosphate. Or under the Full Blood Count link, if that's the comprehensive panel? I don't know what the Aspartate Aminotr... is. I don't have anything like that listed in any of my blood work results. Perhaps the Aussies have some different labels for some of the tests? But the CA 15-3 and/or the CA 125 I think are the more typical breast cancer tests
So this is what my lab page looks like. My CA-15 is and has always been reflective of what's going on with me...as you can see, it is ticking back up again but has been as high as 8000 and as low as 50. They call it a "tumor marker" and you can google it. I know a lot of ladies on here have said that this is not important for them in the same way the CEA has really never meant anything for me...it has always been in normal range (I had labs this morning so it doesn't show yet on this screen shot). Hope this helps a little. There are new lab results in my blood work every week and they are mostly things I don't understand - we only look at the ones that allow me to keep getting my IV chemo or indicate that it isn't working.
hmmmmmm. I can’t understand your photo. But thank you for your response. It helps me though, to know how high C and how low your markers have been. That’s why I gues they don’t only respond to markers but always want to do more scans. They tell me that they give them a much better picture.
So I'm someone whose markers also DO tend to reflect what is happening with my cancer but for many there is almost no correlation. Eg, someone's TM might be still registering low but their cancer on scans has very clearly advanced. For others the scans show nothing new but the TM has gone up a lot. That's why many doctors don't even order them all the time, or why they only use them as a rough guide as to what might be going on inside us. The scans are for the most part fairly accurate
Certainly in the UK tumour marker tests are not routinely done, my oncologist said to me that they are not a good guide to the cancer... Interesting that they work for you. Thank you, and to the other ladies, for sharing.
I'm in the UK too. I have a weekly blood test which I can have printed out on the hospital ward, if I request it. Mostly, I just ask over the phone if I'm okay to come for treatment that week. So far, so good.
Hi, I’m in the Uk and I used to be able to see my CA15.3 marker on the app, but then it disappeared from the list. When I asked why I couldn’t see it any more I was told that it’s a result they prefer to tell you to stop you from worrying if it does happen to go up. I have asked many times to have the result reinstated as I like to know. My marker has been done with nearly every set of bloods, mine are done every 6 weeks as my neutrophils could not recover within a week. My CA marker started at 201 and is now on 31.
Your post was a little concerning to me, I am in the US and get my bloodwork results online. Obviously someone made the decision for you and other people under treatment that you do not “need” to see those results. I think I would have a definite problem with that as well, you should have the right to see the actual results. I do not feel that I am obsessive over my tumor marker results and trust my MD but I like to know and have the results of my own bloodwork to refer back to if needed. I don’t need to be protected from my own diagnosis! Just my two cents…..
I'm told that the CA15 is a special machine and they have to send out my blood for this test - yes the cancer center does not have this machine...??? It has to go to the hospital and takes longer for results. I have been going in a day early for this blood work so I can have it for my doctor appointment since its critical to my decision making. It might be the same for your clinic.
I agree 100%, i feel I am in ownership of my diagnosis if I have all the facts. I know what I’m facing and can deal with it all better. I had come to terms with not seeing the results. They do tell me when they call to release my next cycle, but only if I ask. I need to get them reinstated. Thank you
I would insist on having access to this information (tumor marker test results). It is your body, you have the legal and moral right to know. In the USA they cannot legally withhold any medical information from the patient. Maybe this is coming from the nurse? I'm glad that yours are low (31). That sounds great! FYI, it can vary from one individual to another, my tumor markers have definitely correlated with progression although it may take awhile to show in scans.
Thank you so much for your input. I feel that form four years now I’ve been putting up with this, and it has really been bubbling away underneath, and I haven’t realised how much it effects the way I can be with the truth of my whole situation. It’s lovely to get this feedback.
Timtam, no one can advocate for us like we can for ourselves. Although not deliberately, mistakes and oversights can happen. I am a licensed Healthcare provider. I have experienced this as a patient, a doctor failed to diagnose my Stage IV and essentially just brushed me off. I knew something was not right and went to a second doctor and it turned out I had metastatic disease in my left lung. It was profusely scattered over the entire left pleural area. The (2nd) doctor that diagnosed this looked at the same CT scans the first doctor had ordered/seen. I was walking around with stage IV cancer in my lung, with breathing difficulties and the 1st doctor told me everything was ok! I was sent to the emergency room where a thoracentesis was performed draining 650ml from my left pleural space. I was able to breath better immediately. I know this doesn't happen to everyone, but it should not happen to anyone. Trust your instincts. We don't have to distrust doctors, it is a team effort to navigate through this disease. I have benefited from this site, have learned much and like you, I really appreciate the feedback. It is really good to say even the smallest thing to help someone else. Namaste
Yes, I, like you, was misdiagnosed at the start of my disease. I spent eight months asking a doctor for a CT scan or a blood market test, (as my sister had died young and had also been brushed off). He kept telling me that it was ridiculous that I thought that my rib bones were breaking, because it wouldn’t be possible I would know about it. The pain would be great , and that I’d know about it! Only to find I had extensive disease in my ribs, spine, skull, and hips, that he wasn’t willing to even look at. So after finally getting another doctor to give me a CT scan they found that the Cancer was all through my bones and had been for many months.
You’re right. It should not happen. But it does. All the time. Yes we need control of our own business.
You are in my thoughts and prayers. I'm so sorry you went through that. Just another example of why we need to watch everything ourselves and why we have the right to be told everything that is going on with our own body. Bless you.
Thank you, I have just had a mri, and ct scan, I have a nuclear bone scan this week, hopefully they will all correlate with my low marker when I get the results in February. I’m going to ask again to have the maker results reinstated, it’s nice to show family how far I’ve come and a reminder for me!
Crazycocker.....hope your scan results are all favorable with no evidence of progression! Not everyone's markers correlate with their disease. Truth is, elevated tumor markers DO mean something, it is not clearly understood exactly what. Just part of the overall picture and not something we should stress ourselves out over but monitor and compare to more definitive clinical evidence of disease (scans, pathology results, etc.). Namaste
Thank you Sister3nkc, exactly it's always about the bigger picture. I am OK with it all, you have to be what other choice do we have? I think the hardest thing is not worrying about all the different results as I feel well and the Docs are doing their job, as are the meds. Don't get me wrong though, I am all over my treatment. I feel that in the USA you are slightly ahead of us in the treatments and the way they are used. My neutrophils are always so low and after 18 months of constant bloods until they reached 1.0, I pushed and I am now on a 3 week on 3 week off cycle of Palbociclib 75mg, reading other peoples posts on here it seems you guys have other cycle options? I find one of the most difficult things to cope with is peoples perception of living with stage 4 cancer, and reading one of your other replies, I hoping that it's something I will keep having to explain for many years to come! Congrats on living with cancer for 23 years, that's amazing and gives me great comfort and hope for the future. Thank you for that.
Timtam. My markers were in the 20's. Then they went up a little every month for 2 years to over 200. They they shot up to over 700. It's so scary. They started me on Kisquali in August and the tumor markers have started to drop. I'll be thinking of you. Namaste
Timtam, I have stage 4 ovarian cancer and am on the Ovacome forum, but a couple of ladies on this forum helped me with a question last year , and so I quietly follow this forum as well, and send good wishes to all. I just wanted to mention that the CA125 marker is routinely used for OC and this test is included in my monthly testing before each chemo infusion. It is a good marker for me, but not for everyone with OC. I hope 2023 will be good to thee.
Hi Timtam, I in in the USA and I am tested monthly. My cancer marker test is CA 27.29. That test is listed independently from the CBC and the CMP tests. I can online to lab website and pull up my results and see them.
Ah yes. thank you. It’s not whether or how they works. I was trying to work our if I can SEE the results as I don’t know the name of them in test results, cause it seems that the result is only ever given to me verbally every four weeks after my blood tests.
But thank you anyway. I’m learning here. But I can’t work out what the markers would be called in my test results. I think I will jsut ask my oncologist next time why I can’t see the results and whether she wants it to be that it has to be a verbal handover.
Hello,They are called "Tumor Markers", I have had breast cancer since the year 2000 (yes, 23 years), and the tumor markers always done on me were either CA15.3 or CA27.29. I do not remember any others ever being checked. I'm sure they will select/test the correct ones for your individual cancer/pathology type.
Yeah right. See? I cannot find anything anywhere with those names. I think I have to be given a verbal handover of my markers. they probably don't want us to fret if we read it and the markers have gone up.
It’s not a website, but an app. I cannot see anything in any of the results under these names. But what I’ll do is talk to my oncologist at my next appointment and now I know what I’m talking about I can ask her to make sure I get the results myself. Thank you.
My markers in the US come through Mychart through an automatic release. One is CA 27-29 and the other is CEA . Both give an idea of how the cancer is reacting to the meds but usually scans or other blood tests might be better indications of how it is going. From some other sites some docs don't use markers.
Hi Timtam56, I totally understand your frustration when it comes to understanding your test results. SHARE Cancer Support has a BC and MBC Helpline that fully trained volunteers who are also living with Breast cancer take every call. They will be able to answer any question concerning your treatment, diagnosis and test results. To get connected, if you are not already, here is the phone number, along with the SHARE website link. I hope this opportunity afford you a peace of mind.
Yes, even if you are in Australia! We have callers from all over the world. You should not go through cancer alone! When you call, tell them I (Karen Adams) referred you. These are some really awesome ladies that will take care of you with gentle hands.
A follow up……To all who got on this bandwagon of mine.
I spoke to my onc, yesterday, as I’d had my bloods checked the week before in order to restart my Ibrance cycle, but the lab hadn’t yet sent her my CA 15.3 Marker results yet. I was really annoyed at this, as they have been slowly rising more and more lately. (Last 4-5 months, it’s gone from 88 up to 231).I know it’s not so high compared to a lot of you all. But It is going up.
So I can’t I just hav my Marker results sent to me instead of having to wait to hear it from her mouth all the time? She said “I’m really sorry, but it’s protocol. I can’t do anything else, and we feel that if people get the results themselves, they my get worried, and not really see the big picture that we have to take the scans into consideration.” So I retorted with. “But I’m a big girl and I can look after myself. I can also decide on how I feel and allow myself to feel without belting devastated because I’m feeling”
She was so lovely and apologised profusely.
So. None of you have to respond. I just wanted to let you all know how I got on in the end.
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