hi , does anyone go to the marsden and if so do they use these markers? i have an appointment there next week and was wondering ,?
Hi tracy,
I go to the Sutton Marsden and yes my tumour markers are done regularly. I don’t know if the London one does though.
dawnhc
have yours gone up and down much dawn?
I am in France and have mine done every 3 months. After rads ( one year ago) they were 9.5 and are now at 7. Not sure what the norm for them to fo down to though.
Sorry just realised i am in the secondry section - this new board isnt very easy to follow!
My onc seems to rely on the tumour markers and they seem to be going up and up… anyone know anything about them?
Wisdens
I was sent for a blood test recently and noticed the request written by the consultant had circled CA15.3 and thus I discovered tumour markers. I guess you could google for other information back CancerBackup is usually pretty good at explaining things to the “uneducated”. Cancer Research UK may also have some information but I couldn’t get to the site just now.
Hi tracy,
My tumour markers seem to be quite stable - somewhere between 14 to 16 
Dawnhc
I have them taken every 4 weeks.
Belinda…x
Tumour markers aren’t something you can compare between women as they are very individual and also vary in range depending on where you are in your treatment. There are some times when they may be rising, such as during chemo, and only the onc. can tell by how much the rise is whether this is a normal or good or poor reading or completely irrelevant. You just have to ask if you want to know. Having a baseline measure is good, also knowing what they read when you the disease is stationary. There are several different markers - CA15-3 is specific to BC but doesn’t always move around a lot. CEA is a measure of antigens to embryonic cancer cells - everyone has these with or without cancer. Can indicate breast or colon or some other cancers. Sometimes these markers do not revert to their pre-treatment levels even when you have recovered but that doesn’t necessarily mean much. It is the change in the levels over the months and years that show things up.
In case you’re interested in how to watch this for yourself…
I plot my results on a graph against time and then measure the rate of change.
So I take the absolute value and mark it in a graph where time goes along the bottom line and tumour marker values are on the vertical line. I then join up the dots.
On a second piece of graph paper, I take the difference between, say the 1st and 2nd tests, the 2nd and 3rd tests, etc. and divide each of these by the number of days between the dates of the tests. At times this is just a couple or 3 weeks. Other times it can be a hundred days. But taking the differences between the readings and dividing them by the time it has taken them to change gives me a rate of change. If I plot these on the second chart I get a line which shows the ups and hopefully sometimes the downs too.
The great thing is that when things are stable on the first graph, the rate of change on the second chart can go down to Zero! Very satisfying that. Sounds like that’s where you are, Dawn.
When you’ve joined up the dots, you’ll see a trend. If the next measurement is different from the trend, that’s the good news/bad news bit. If you don’t want to know, don’t make a graph. But I’ve found mine useful in discussing my treatment and progress with the docs. and as I can now visualise a trend I feel I can use my mind to accept where I am and try to influence the progress. Makes me feel less powerless and there is evidence that imagination can move mountains! I’m not into blind faith, you see - I have to be able to see the mountain so I can visualise demolishing it rock by rock, tumour cell by tumour cell as my treatment patrols my body and does its thing and I do what I can to help it to work.
Wishing you well,
Jenny
wow jenny that is amazing but i am not good at maths so think i will leav e that one ! maybe you can understand mine a bit ! i started at 312 when they found mets to bone and liver , i started andrioymcin chemo and they dropped every round of chemo finally to 22 which my oncologist was thrilled with . i then had a scan which showed the bones were healing nicely and the liver tumours had shrank to around 5 % . great we all thought … then started testing markers again just after starting aromasin and they starting rising 1st to 48 then the next month 115 . i have now been on aromasin about 9 weeks . i have been in a terrible depression about these markers and have had to get anti dep from my doc which have made me feel better . needless to say i now have another scan for 3 weeks to see whats what and i know i will be in a mess again . i find it so hard to cope especially round scan times ,
thanks jenny xx
A girl after my own heart Jenny!
I too put my markers and my blood levels on a graph, makes me feel happy to see steady line or moving down, of courese that carries a risk when it starts going up but at least I can ‘see’ progress! Sometimes its hard to visualise whats happening in your body and this just helps me to feel some sort of control! Can’t do the mathsy bit though, just like looking at the graph!
When they have gone up I tend to just write the figures and don’t plot them until they start to come down again…a bit of denial there I think…
Love Kitkat
Hey, KitKat, Glad your numbers are coming down! Mine aren’t in absolute terms, but if I carry on the graph to where it would have got to if I hadn’t had the radiotherapy, in otherwords, just extend the line in the direction it was going, the next reading I had was lower than the projected line. So I’m guessing that RT knocked it back. As yet can’t tell if the new reading was on its way up or down! I’m visualising DOWN! At one stage last year the absolute numbers were up but the rate of increase was down. They still crept slowly on until the PET scan found the tumours and RT followed a month after.
Tracy - the aromasin no doubt takes some time to kick in so I think I would want to do a mental count-down pulling those markers down a tad each day. Do you meditate? If so, it would be good to think about it and visualise numbers under 115 before your meditation. Meditation helps me to unscramble my mind. I use a CD by Jon Kabat Zinn which is just a simple lying down body check or sitting up mindfully breathing. These are CD’s which back up his book “Full catastrophe living”.
Exercise, when I can get together enough to do any, (fatigue at the moment from just starting Femara) I also find calms me and takes me back from the edge of depression and fights the tiredness. Be gentle with yourself. I’m glad the anti-dep is working so that was a good choice of yours. Thinking anxiously about the next scan isn’t going to change anything but in 3 weeks you also have time to have some great moments and if you dwell on the scan, imagine it all clear and give yourself a break. We only have moments to live and we can choose how we do that, one moment at a time. We spend so much time in our heads in the past or in the future, and very little time in the moment. I can do it, at moments! and so can you…
Wishing you well,
Jenny xx
thanks jenny . have your markers gone up and down much? and if one hormonal doesnt work well do you think another wont ?
I think my markers are over 4000 yes all those noughts… anyone else - it sounds scarey perhaps they are different ones to the one quoted above…?
There are various different markers used, Wisdens. You’ll have to ask what they’re monitoring. And we often each have a different bsaeline, despite what is called the “normal” range anyway. There are some new ones which have only recently been introduced and the blood tests for them are only available in a few centres so far.
Tracy, yes my markers have moved up and down and my radiotherapist says to take no notice and not even get another blood test or scan for the foreseeable future as the results are unreliable. My onc. doesn’t agree and is a keen marker watcher but also sometimes shrugs and says the changes may not mean anything without other confirmatory tests - if all other blood factors are more or less within limits. When my cholesterol went up, though, and I wanted to think it was the Arimidex, he thought it was a possible indication of recurrence and so he dug deeper with scans etc. and he was right.
Femara has come out in trials as more effective than Arimidex. Even within one family of drugs, some can be more effective than another. I don’t like the bone weakening effects of aromatase inhibitors and am doing what I can with diet and exercise to not lose any more bone mass. Also aromatase inhibitors are still relatively new. So longer term effects are unknown. It seems a good idea to switch anyway as cancer cells are so adaptive through the mutations they induce in DNA and RNA that it’s good if we are as much a moving target for them as they are for the medical profession. Tamoxifen and Raloxifen are related to eachother and strengthen bone but have other side effects and are very different from the aromatase inhibitors. Tamoxifen blocks the oestrogen receptors. Aromatase inhibitors block oestrogen and progesterone production.
I don’t have another blood test till around a month’s time and results 7-10 days later. But as I was so anaemic and my white blood cells were so low after extensive RT, a month either way doesn’t matter as I wouldn’t be up to treatment even if it were recommended. For the time being I feel disgustingly healthy, thankfully, except the fatigue from the Femara, which I think I’ve already said I’m tackling with exercise when I can get the motivation.
Wishing you well,
Jenny
I’ve just come back from my chemo and all bloods ok but tumour markers still sky high in fact have doubled so down in the dumps dont see onc til 1st oct… I will have a trawl on the net about the markers… thanks anyway Jenny
Hi Wisdens
I’m just about to read up on tumour markers as I’m seeing my onc in an hour and am becoming obsessed with a subject I know zippo about. I am reading Musa Meyer’s “After Breast Cancer” but I think that CancerBackup and Cancer Research UK may have layman’s information or the US site breastcancer.org/.
I want a graph with dots and I just know if I introduce this into the conversation later with the onc I will get tongue tied and that’ll be another dent in my confidence that I don’t need. Sigh …
Dahlia
My onc told me about graphs and things but they still go up and I think he was trying to reassure me that if they dont double…??? Anyway I’m off out to dinner with friends tonite so should cheer me up I think I always feel really down when I am going through the chemo and it isn’t working… another thing if it isn’t working we are off for an exotic holiday - at least myOH says so - in Oct if its working we are off in Jan… so something to aim for, .