Tumour Markers CA15-3??

Hi

I recently had a blood test done called a CA15-3 to check tumour markers.

Are these done to check just if there is a secondary present?

The trial nurse said the normal ranger was 0-28 and mine was 33.

I know they are checking to see if I have a secondary as my MRI on fracture was apparently worrying.

I myself am in pieces as I am still on my chemo for primary dx January this year with only 2 lymph nodes. I won’t go into it all as I just can’t stop crying…how can this be???I feel so cheated after being told umpteen times…don’t worry, there wont be anything to worry about not yet !!!

Can anyone help me???

Love P xxxxx

Dear Paula

Please feel free to call our helpline on 0808 800 6000 to talk things through with one of our specialist nurses, they can offer you information and a ‘listening ear’ during this worrying time for you. The line is open mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

Hi Paula, I have these markers taken every 3 weeks as I have bone mets, some hospitals consider up to 38 to be normal…Belinda…x
PS…I hope all will be well for you but just to add I was diagnosed with bone mets in 2003 and feel well and pain free, I lead a normal life…Take Care…x

Hi Paula,
I am so sorry to hear your news and can imagine how anxious and scared you must be feeling. I think this will be a case of them switching your chemo drugs IF there are signs of anything else. I think they will be moving onto other options like taxanes, but this does not necessarily mean that they will not still be optimistic about helping you.The ladies who are having chemo first, often change drugs if one does not appear to be working. I have been having my CA 15 3 tumour markers tracked from the start. I have been told that although they can indicate things they are not a test that can be relied upon. Some people have higher levels than others for no apparent reason. My first score was 25.3 and on dose 2 it was 24.8. The result takes longer than the other tests so when I go for epi4 on Tues I will ask for my dose 3 score. People do have scores in the high 60s and 70s, to put yours into perspective a little. Everyone has their’s tracked at my unit. It is apparently more accurate at the higher levels according to whether it is going up, staying the same or going down. It has not been found to be particularly reliable for diagnosis apart from at high levels from what I read.
Hope this helps a little, probably not. I am waiting for scan results too after a dodgy chest x ray they forgot to follow up on. You know I have come to the conclusion that I cannot change whatever they have to tell me, so either I am wasting good days or worrying for nothing. I will just want to know IF i need to, what they are going to do about it.
Hugs from everyone here and i think some others with more experience will soon be posting to give you some more positive stories or info. Thinking of you
Lily x x

Hi Paula - I had this test in the early days on suspicion of secondaries.- mine came out at 29…the level you have is just outside the normal range for my hospital and my onc said that that is what would be expected as we know we have breast cancer!!!

Hope this helps.

Love
Heather

Hi ladies

My Onc said last week to prepare myself for the fact it might have spread as my MRI on fracture was “worrying”. Its the T5 vertebrae also I am anaemic( not unusual after 7 sessions of chemo me thought) and an enzyme in my liver function was raied indicating something else could be going on in my body. I have had 4 EPI and am on my 3rd course of Capaceitabine (tact2 trial)

It is such a huge shock as I had “benign” lump removed in Dec told Jan it was Grade 3 cancer IDC triple negative so I asked for mastectomy as couldn’t bear the thought of having to wait for clear margins and the thought they may not get them, plus alot of get the whole thing off and gone was in my mind. Then had mastectomy and all lymph nodes out 2nd feb only 1mm left in breast and 2/13 lymph nodes involved so again…no worries you are not what we consider high risk.

I get back pain see GP and Onc they both say hey yes you have a bad back and not surprised as carrying round toddler etc. Seee Onc who said 99% sure its all mechanical so starts to do her stuff on my back after 7 sessions of improvement I get horrendous pain in bra strap area. Get x-rays done via my chiro and yes compression fracture on T5. Take X-rays to Onc who said " I am not unduly worried but will send you for an MRI ".

Breast care nurses both told me no way would this be anything sinister as it didn’t add up…no pain before fracture, only 2 lymph nodes and no cancer showing on x-rays…go away in the nicest way and sleep dont fret.

Last Thursday…wham bam…we think it has spread, doing CA15-3 test, CAT scan and bone scan but pls prepare yourself…sorry can’t confirm yet see you in 2 weeks. !!

Had CT scan on weds…no answer yet plus my Onc is at another hospital…so of course no-one else can talk to me hey !!!

I waited 3 and a half weeks for the results of my MRI all because my Onc was on leave…I am sick of this no-one else to talk to me pooh !!!

I waited 3 months to be told I had breast cancer…everytime they tell me not to worry it turns around and hits me smack in the face…

Now I have to carry on as normal infront of my 20mnth old boy and 6yr old girl…my GP today did another blood test as he is pretty concerned about this anaemia and them not wanting to do a transfusion until they can find the sourse of why I am aneamic…

sorry I am ranting I feel so much in limbo yet again…I can’t move forward I am worrying all the time, I feel sick sad lost and very alone…

xxxxxxxxxxxx

Oh Paula

I feel so much for you! It’s bad enough having to go through so much uncertainty and anxiety, but having to wait like this must be impossible to deal with. You have every right to rant - you need results and you need them fast. This sounds so awful for you.

Paula … lots of hugs to you. Obviously I can’t alleviate the pain you must be going through … but I can send love and hugs to say you’re not quite alone.

Take care

Gill xxxx

Hi Gill

I am sooooooooooooo fed up with the waiting no-one seems to give a damm but if it was them they would or one of their loved ones. I need to know one way of another.

The back pain is ok…some days good other days not so good. All managed with good old diclofenac and co-codomol but now I have bloated tummy with my doc thinks could be fluid build up…oh great just another thing !!!I am fighting stinky cold aswell which my lovely little A passed onto me…

How are you Gill?? Hope you are ok hun

Love P xxxx

Hey Paula

I’m just appalled that you’ve had to wait so long with this … and fight to get yourself taken seriously. It’s awful. I thought at the very least cancer services would show the care needed.

I’m glad the back pain is being managed but what with a bloated tummy and all the worry it must be dreadful for you. I can’t say enough how much I feel for you.

I’m fine. Just a bit of hand/foot syndrome which is nothing compared with what you’re going through.

I’ll email later - about to eat. I just want you to know that I’m really thinking of you and hoping for the best!

Love

Gill xxxx

Paula,
hope they get their fingers out and give you the time and explanation that you deserve, very soon. Try to focus on what you want to ask when you see them, maybe make a list of questions because it is going to be very hard to focus and remember everything they say when you are so anxious.
Big hug and thinking of you
Lily x

Thanks Lily

I suppose I am trying to see if anyone on here can throw some light on what tumour markers mean??

Take care Lilly and all the best with your treatment…

Love P xxxx

Hi Paula,
I think the scans will be the deciders in all this as they are accurate and give a clearer picture. The tumour markers can indicate something going on if they are increasing but they are unreliable at low levels, so they don’t use the test on its own to decide things.
Do you have an appointment yet? As you are on a trial I asume you have your own research nurse, can you ask her for more information or an idea of when they are going to talk to you? They must be really looking at your case because of the trial. I wonder if they will change your drugs to one of the taxanes, which have been showing good results in trials. You might consider asking for a second opinion too, as they have given you little reason to have confidence in them, from what you have said. Maybe ask for one of the top units for BC.
Just trying to give you something else to think about. Being on the trial too this has set me thinking.
Love
Lily x

Hi Lily

All I have had so far is ct scan no appointment yet for bone scan…waiting over 1 week for that now. My trial nurse is lovely but she doesn’t understand these markers and my Onc does between 2 hospitals so its so hard to get hold of anyone. We are short of BCN now as one on holiday and one on perm leave ???

I am thinking of asking to go to Marsden in Sutton…bit of a journey but may be worth it.

Thanks for all your thoughts Lily…I will ask this week when I see Onc on thursday

Take care

Love P xxxx

Hey Paula,
Really sorry to hear you are having a tough time at present. Waiting for results is scarey and you seem to have been messed about a lot. I think I have been treated at the same hospital as you and was happy with the ‘team’ who treat me (hope my faith was/is justified -) However there does seem to be a lot of waiting for results - compared to some of the other centres that is. i also found i had to wait ages for rads. i would certainly look into the Marsden as a plan B. Hope things improve massivly for you…
cheers
caroline

Hi,
regarding the long wait for rads, it was 11 weeks in my area, as it does not have the equipment and we go to another town. I insisted on being referred at the same time as for my chemo so I am already logged in ready to go straight after chemo finishes in Nov. Can I suggest you try to do this, my onc did it for me. Paula - my research nurse went over and got my recent CT scan booked but the bone scan was quick as they don’t get so many referrals. I would ring them up and explain or even offer to take a cancellation, they must get some. Lots of luck on Thursday, you could ask him to make you urgent that would move you up the queue too.
I get epi 4 tomorrow, then on to 4 x CMF so please keep me posted but may be a bit less sensible! Sorry in advance
Lily x

Hi, my tumour markers had gone up slightly when I went in today, told not to worry this is normal and that I was below the magic figure of 39 which my area look at.
Guess that makes you under too. Good luck this week
Lily x

Hi Paula,
Really devistated to read your other thread on the secondaries site. Don’t know what to say. Definatly get a second opinion. I know it’s no good shooting the messenger but you do seem to have been messed about A LOT, I think my onc has been off on parternity leave (which is lovely) but there should be others to deal with URGENT cases like you. Somewhere on here there is a thread for triple neg ladies - can’t find it right now but I’m sure otheres will be along to offer advic/suport soon.
big hug
caroline