Tumour markers some advice please

[Lynnq]

Hi Sam

My secondaries are in my bones - upper spine inc. top few ribs and skull and also in my pelvis.
I also have shadows in perioneal area which my onc said were cancer and also in my skin there was some spread to a small lesion under my right breast. They found that I had primaries in both breasts.

My cancer is ER+ 8/8. I had bilateral Mx and was put on Letrozole and a monthly Zometa infusion along with adcal tablets.

This is the only treatment that I have had. My bone mets were stable at last scan, and the peritoneal shadows are no longer showing, but onc won't dismiss them...tho obviously pleased. I have a small spot on my Mx scar which onc has photographed but that also has not changed since treatment started.
Letrozole certainly seems to be doing it for me...

[Sarn123]

Lynnq hi can I ask what treatment your on and where your secondaries are please? Thanks sarn123 xx

[Lynnq]

Hi all

My Onc takes my TMs every time, so much so that he won't do scans. Had to persuade him to do one after over a year, when I was having a lot of hip pain. He relented and that scan was clear.
Next quarter (i am seen by Onc every 3 months) saw another onc......on the same team - who said that TMs were not particularly reliable.!!!!

My TMs were initially 418 - over 2 years ago - but fell since Dx every reading and have been around 35-40 for a few months now.
They tell me that they look for a trend and wouldn't particularly be concerned if they rose a little.

[Sarn123]

Hi all those not being tested for TM s I personally have always had a good idea of what's happening with treatments or progression ect from my marker results so I think you should defiantly ask why you're not being tested my onc gets them done every blood test I have, and we use them as a guide in between scans. The test is called CA15.3 hope this is of some use love sarn123 xxx

[Marirose]

Hi everyone I have read your posts with interest my onc's don't do tumour markers and when I asked my last onc why they didn't do them he replied because they are not conclusive. Should I try again with my new onc or would I be doing myself a favour by not knowing. The new onc is young and lovely and I met her for the first time 2 week ago she looked at my breast and skin mets and I told her I had lost spots of blood from somewhere under the breast she said one of the mets where ulcerated I inspected myself with a mirror it is my chest wall tumour she had mistaken for a met. So could tumour markers be worth mentioning????

[rosie53]

I agree with you there Helen, you can get a little obsessed with them and read too much into them, but must admit I do have faith in my onc and if she tells me she isn't worried then it does make me feel better.

Hugs Janette xxxx 

[2catlady]

Hi,stress,the only thing I would say is you can get a bit obsessed by TMs ,I do. I wish they weren't taken now as I panic when they start going up. Mine are a good indicator of C adapting. But on some ladiesTMs aren't any help.
Hugs,Helen xxxx

[stresshead]

Hi ladies, just ben looking at this thread with interest..i have never had TMs done in 4 yrs since i was first diagnosed. However, i have skin mets (2nd diagnosis after being off chemo for just 6 weeks and no response to letrozole) and recurrence in the fatty tissue of my reconstruction and am now told that thses are not picked up on scans..useful!! so i was thinking about asking if my Tms could be done as an extra monitoring system. Only trouble is i would be even more terrified if they kept going up so dont really know if i would benefit but if they highlighted something quicker than a scan i supose thats good?? nothing is ever asy is it? x

[Sarn123]

Thanks Janette yes all the messages have helped I think it was a shock that they shot up so quick! But overall I feel fine. My cancer has been hormone pos and her2- since 2009 but now I have new tumour in liver they are going to biopsy me coz it could of changed to her+ and that could be why they have changed, we ll wait and see!!! Thanks take care have a nice weekend xxx

[rosie53]

Hi Sarn, TMs....They don't half cause some confusion!!! Some oncs don't even use them, mine have been slowly rising and I was getting myself in a right old state over it but I had a good chat with my onc who explain them to me, as Helen has said they look at the trend rather than the actual number plus they look at the bigger picture, scans, TMs, and how you are feeling in general. Try not to get too hung up on them....that's what she told me. Hope this helps.

Hugs Janette xxxx 

[Sarn123]

Thanks belinda on the mend now xx

[belinda]

Oh Sarn, how horrible, shingles takes a while to recover from doesn't it? I hope your markers start to respond soon. X

[Sarn123]

Hi mermaid, yes every ones differant when I'm in a stable place mine go down to completely normal, so it's probably a good indication that your bone mets are all stable, May that continue for you xxx

[Sarn123]

Hi Belinda thanks, I too get obsessed with the markers as in my case have always been a good indication of what's happening, but like I said and you mentioned I've just got over shingles and I said it could have something to do with that, last scan showed increase but I had stopped treatment for 11 weeks coz of the virus so hopefully I've been back on everlimus for 8 weeks now we might see them come down a bit. Fingers crossed for Monday thanks xxx

[Sarn123]

Hi Helen and Sally thank you for your message it has put my mind at rest, I am use to getting good results and generally stay very positive! I had my bloods done again Friday as an urgent request from onc who is fantastic and I'm seeing him Monday to discuss next step. I'm on everlimus at present and he hopes that it might not of kicked in as only been back on it a few weeks. You never know they could of come down a bit. Thanks again xxx

[belinda]

Hi all, I've been having markers taken since 2004. No expert, but this is what I have gathered from having markers taken every 3 or 4 weeks. In some patients they are completely unreliable, all will always appear normal whatever is happening. They can rise for no apparent reason too! Sally have you had a virus, cold? Just a minor everyday ailment can cause them to rise. So overall the Oncs are looking for a reliable trend in your markers, 3 or more readings to gauge which way they are going. Markers can fluctuate a few points from one reading to the next but a steady doubling or halving usually indicates how a treatment is working. I find I obsess about markers but try and see them as a early warning system, if you find your markers heading in the wrong direction I guess at least we are finding out sooner rather than at a later scan?
X

[Mermaid007]

Hi,
I have widespread bone mets yet my tumour markers have always been normal ie the same as someone who doesn't have cancer. I don't understand why that is? Hence no good whatsoever to my onc

[2catlady]

Sally,my onc is the only one at hospital that uses them!! All others rely on scans. The batty man watched mine go up 100 every month and still did nothing.
If your scans are good Sally I'd take that to the bank.
Hugs,Helen xxxx

[sallyhennypenny]

This tumour marker business is driving me mad!  I have tried to find out about them, and it seems what Helen has just said is spot on.  

Mine started at 1000 when first dx with mets.  They went down for a while but have been rising now for 4 months and are 1700.  Because of this I have had 3 scans, 2 thorax and pelvis and 1 brain.  The scans show no spread, but I am going to ask at next appointment what my options are as at present I am on anastrazole and surely if it is still working the TMs would not be rising?  I also feel well, but am getting some pain in rib and a shooting pain near my shoulder blade, and of course all this is a bit of a worry.  But nothing showing on scans so far!

One other thing my dr said was it could be cancer actually breaking down (good) but that would only cause a temporary rise.

Anyway I haven't seen my onc consultant for a while, only a Dr and the nurse practitioner who are good, but as they admit to being baffled I think I'm going to ask to see consultant if they are still rising next time.

As some hospitals don't measure them because of unreliability I don't know how seriously to take it?? Aaargh!!

[2catlady]

Sam TMs can be unreliable and oncs tend to look at the trend of them rising every month. Mine went up to 1000 after only being 33 at start of treatment two years ago.374 is still low but it may be an indication that you may need a different treatment now. All cancers adapt to treatment so the oncs then change. Mine adapt in about three months in other people's It can take years.
Hugs,Helen xxx

[Sarn123]

Hi since I posted on here a few weeks ago things have gone down hill! I had my markers done last week and they came back at 374 which is double the highest they ve ever been in the past I don't feel unwell or in any pain, so you can imagine my shock when I heard that!! I would be grateful for any information on this, I have had them reduce to 30 in the past but just never had them this high!! 🎀🎀🎀