Tumour markers - your experience please!

[Maldives]

Hi jo. I had this conversation yesterday with my onc. Over the past 4 months its gone up every test. It was aroun 77 now 400's. He said the tumer markers tell him he needs to do mri scans. My problem is im not unwell. Apart from being tired all the time im doing really well. He is checking my liver and head ( because of my jaw, its gone numb side effect of zometa i think )
To make sure everything is ok. Last results in early dec everything was stable. So to sum it up markers are only one part of the guide. Dont worry too much about them jo. As long as you feel well. Sue xxxx

[Moijan]

Hi Nanofthree and MarionP

i have mine done every three weeks or so...looking back on mine  can see that they were worse when 

I was under extreme stress!

my onc uses them...but in conjnction with mri and cts to get the whole picture......am currently doing very well on all fronts and they are quite low...hope that helps

Mojanxx💚💚💚

[MarionP]

Bumping up for Nanof three

[belinda]

Hi mrsb, I used to chart my TM's too. 🙂
I am not asking for mine at the moment, I have only been comfortable not knowing them over time, mine had risen quite steeply pre latest chemo. When I start chemo I stop asking for TM's and just crack on with it, hoping if it wasn't working it would be pulled after so many cycles. They are still being taken each cycle. X

[mrsblue]

OK, here's my experience for what it's worth! As you probably know, there are many types of bc - also TMs aren't routinely used for primary bc as far as I know.

I was dx with bone mets 2006 (a few weeks after primary dx, double whammy) and liver mets in 2009.  My TMs are done regularly with blood tests and are looked at by the oncs alongside scan results and symptoms.  My TMs have been a good indicator of what is happening.  I read somewhere (sorry I don't have a link) that for those of us with bone mets, TMs can be helpful.  As someone has already mentioned, CA15.3 levels can be greater than zero even in people who don't have cancer- the "normal" range is below 35.  Mine have gone up and down (at one time I kept a graph) max about 900 when Taxol didn't work for me, then I went straight on to capecitabine and after 2 years my TMs had stabilised at about 70.  Since then there has been an upward trend, I don't ask the oncs 😞 if they go above 1000 I don't think I would want to know.!

[Elily]

My Oncologist does look at tumour markers together with a whole load of other readings that he has on his spreadsheet. But he also sends me off for regular scans (every 4 months) and looks at and enquires after my general health. He also knows that, for instance, I work full time, have a long daily commute, do the shopping, housework and cooking ... so I'm obviously not that I'll!

[bill-ben]

I hadn't heard about TMs until I read it on here. I questioned my oncologist about them. She doesn't use them as she thinks scans are more reliable. It does seem a bit confusing as to who is right and who is wrong and are you missing out on something importantant

[rosie53]

Hi Jo, i had a good chat with Onc yesterday about markers, when i first started treatment last last yr my TMs were 250 after 3 month on tamoxifen they down to 125 then 99, in Jan they went up to 114 and my last one is 135 i have got myself in a real tizwoz about this.
She explained that some patients they can be in the thousands others in low numbers its the trend that they look at, she said dropped by half when first on treatment and now it is staying at a steady level and that other things can make it go up ie: a cold or infection (which i have had)
Ultimately they look at the bigger picture scans, TMs and how you feeling in general.
Hope this helps and i waffled on too much 🙂
hugs Janette x x

[Tinkerbelle]

Hi, in letters from onc to GP it states on one letter CA-153 is 7 and on another CA-153 is 6 and CEA 4.  I don't know if there are differences in reporting and they mean 70 and 60, but that's what the letter says so they don't use them for me.

Tink x

[Mitch23]

hi all

thank you ladies for your replies. it does seem that tumour markers can be inconsistent and i can see from the replies that they work for some and not others. they did give me a list of them dating back to june 2014 and you can see the dips when a treatment was working and raised when it had stopped working. I think they are useful for a guideline. Here's to many more dips for everyone!

belinda - thank you that its an interesting website.

Tinkerbelle - 7 - is really low. Has it ever moved from that?

joxx

[Elily]

I'm hoping to get down to 33 (or lower) for CA15-3. I was at 95 in October, now down to 67 and planning to stay on Capecitabine for as long as it works bringing those pesky markers down.

When I was despondent with my markers going up last year to 95 after I was off Cape, my Oncologist shrugged and didn't consider that figure to be very high!

[Tinkerbelle]

Hi, my hospital doesn't use tumour markers for me as they are not a reliable indication, but they do look at them for all patients.

My CA-153 has never gone above 7 despite twice having progression in my lungs.

Tink x

[stresshead]

Hi, apparently my hospital doesnt use TM's..found this out from my Psychologist as didnt have the guts to ask the onc. She said to ask him if he thought it might be useful for me to know but not sure whether i'm better in blissful ignorance??!!

[belinda]

Hi Jo, those are very low markers, it may, I'm not in the medical profession only as a patient 🙂 be why the Onc doesn't rely on your markers. Those numbers you have for CA15-3 (20-mid 30's) could be found in someone with no cancer. Many cancer patients have readings in the hundreds, thousands which double when the cancer is active. Not everyone has reliable markers so scans are often more useful. My markers, up to now, are reliable and I have them taken every 3 or 4 weeks but very few scans, which suits me but I realise not all would be happy with that arrangement.
Have you seen this site?
http://labtestsonline.org.uk/
It's quite useful. X

[Mitch23]

Hi all

Went to the marsden yesterday for treatment and was shown my tumour markers fir the first time. My onc doesn't use these to base his treatment on and prefers to scan. How many out there use these or think that they are quite a useful tool? It was a CA15-3 and when my treatment (cape) stopped working it went up to 33. I have been on taxol and have just had fifth session and the markers have dropped to 25. Hoping for more shrinkage for everyone!

Best wishes jo xx