High Ca15-3 but NED

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kt1966
kt1966 Member Posts: 1,326
edited December 2018 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi, this is my first post. I have been lurking for a while & am impressed with the help & support you all give.

Is there anyone who has had high markers, but apparently NED. My markers have been normal until this year when the Ca15-3 has gone up to 387. The scans I have had (x-rays,CT,Bone scan & MRI) have all been ok (apart from a bone island on my spine & fluid around lung on MRI but not on x-ray).

I have been feeling more tired than usual and a little more 'unfit' (mildly short of breath) & have had a cough (turned out to be reflux, on omeprazole now).

My oncologist says the proactive approach is to suppress my ovaries with zoladex (I'm 45) and start letrozole, which I have done. I'll also need to have zoladrenic acid once a year for my bones as I have osteopenic hips (a bit scary as it takes a while to get out of your system, too bad if it disagrees with you!, but at least it helps stop BC recurrance as well)...

So, I have been researching & trying to find out about tumour markers, how accurate they are etc, I know they work for some. Seems that higher numbers indicate mets? lower increases mean benign disease? Anyone know?!

Taking lots of life altering drugs is drastic, I hope I'm doing the right thing based on markers alone...but definitely don't want BC back at this stage....I want to be here for my kids (13 & 16) & hubby!

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  • bak94
    bak94 Member Posts: 1,846
    edited August 2011

    I don't know much about tumor markers. My ca27 29 was slightly elevated when first diagnosed, have not have them done since on chemo. I think I would be proactive like you with rising numbers, but I have heard higher numbers could mean something else. What does your doc think? I sure would not want to sit and wait for somthing to show up!

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  • toomuch
    toomuch Member Posts: 901
    edited August 2011

    KT66-I don't know much about tumor markers as my MO doesn't believe in following them. But I also had ILC and I know that it metastasizes to different locations then IDC and it's sneaky in the way it grows. If I had rising tumor markers, I know I'd be worried. ILC can go to the ovaries and intestine. I would want a colonoscopy and a pelvic CT if I were you. Ofcourse, the rising marker may be from something different entirely and I hope that they don't find any ILC.

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  • bevin
    bevin Member Posts: 1,902
    edited August 2011

    Hi there,  My Onc does test tumor markers.  He believes it gives another part of the picture.  I dont want to scare you, but I will share that I have a dear friend who turned out to have bone mets and tumor marker elevated but nothing on scan. Another scan 8 months or so later showed bone mets. Onco stated they were too small to see the first time. 

    I'd have your Onco test you tumor markers again. I have read they can elevate due to any inflamation in the body. Also, its more the on going picture of them rising and staying high thats an issue. A one off test, could be a bad test.  You should definately ask him and have them re done the next month. and then I'd encourage you to have him stay on top of scans to be sure nothing is awry. I am sure its not, but best to be vigilant.

    Good luck to you.

    Bevin

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  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2011

    Thanks for your replies.

    I definitely feel I should do something, hence the 'proactive' approach.

    At the mo I'm kind of over all the scans & tests- if I'm not going to have one myself I'm taking my elderly in-laws for theirs! So I'm hoping I'm doing enough to keep the beastie at bay. Time will tell I guess.

    (my original lumpectomy was ILC, but the mastectomy showed multifocal ILC, with IDC in there as well- don't know if that changes anything) 

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  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2011

    Thanks Bevin, I agree with you. I like to be prepared for the worst but hope for the best as someone else said.

    My Ca15-3 was a little high last year at 55, but this year has gone from 222 to 253 to 387 in around 3 months. So it does concern me!

    The onco wants to retest in 3 months to see if this new regime I'm on will bring the numbers down. If it does he says he won't retest again (onco's don't seem to be big on markers here- my GP ordered the test first)

    Undecided 

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  • bevin
    bevin Member Posts: 1,902
    edited August 2011

    Yes - here in USA you'll find many opines on tumor markers too. Some Oncs use them routinely others never. 

    Good luck, keep us posted. I hope everthing turns out ok and you stay without evidence of any issues! 

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  • kt1966
    kt1966 Member Posts: 1,326
    edited August 2011

    Cheers! Watch this space....

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  • kt1966
    kt1966 Member Posts: 1,326
    edited September 2011

    Hi. Just thought I'd update where I'm at.

    I'm driving myself nuts wondering & waiting! I keep coming on the forums hoping to get answers, but also trying to forget about it all & put it behind me! 

    Today I had ultrasound of my lymph nodes in the L) axilla (and the breast) as one was enlarged. They thought that one was ok, but another one was too round (!) so they will rescan in 3 months to see if anything has changed...

    I'm finding it so hard to move on. I want to forget BC until I see my onc in just over a month. I really want to know if the makers are coming down yet! At the same time I want to know if I should be on all these drugs- what if the markers are because of something other than cancer and I'm putting my body thru this for nothing!

    Told you I was driving myself nuts! Undecided 

    Does anyone else do this or am I crazy?! 

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  • cp418
    cp418 Member Posts: 7,079
    edited September 2011

    Instead of scanning can they do a biopsy to help you with quicker answer?  I think it is very good that you have started Femara.

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  • kt1966
    kt1966 Member Posts: 1,326
    edited September 2011

    Oh, Bevin (hope you see this), what did your friend do in the 8 months from the markers going up until the scan came back for bone mets? Did she start treatment, or wait till the scan was positive to do something?...

    How is she now, I hope all is well with her.

    Cheers Smile 

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  • kt1966
    kt1966 Member Posts: 1,326
    edited September 2011

    Just saw your reply cp418, thanks.

    I'm not keen on FNA as last time I had one it gave a false negative and the node is prob to small to cone biopsy. So at this stage I'm 'happy' to wait a bit and see if anything changes as far as that goes... 

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  • kt1966
    kt1966 Member Posts: 1,326
    edited November 2011

    Hi, just another update. I saw my oncologist today. The Ca15-3 marker has come down to 135!

    So it looks like I'm on the right drugs.

    I'm just not sure what it means as far as my stage goes? Still early, but with micro-mets?? Who knows, but at least its being dealt to. 

    Now I just have to decide 10 years of zoladex injections once a month, or have an oophorectomy?? 

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  • MarieK
    MarieK Member Posts: 911
    edited February 2012

    kt1966 - thanks for starting this discussion.  I haven't been on this site for a while (living the "normal" life) but after my blood tests came back with an increase in my CA 15-3 levels I started searching and found this.

    One year after DX I started getting CA 15-3 tested every 6 months and it was low - 18 (7/10), 18 (1/11) , and 17 (7/11).

    But my last test - done on Monday (2/12) - has more than doubled to 35.  According to the lab report it's still under the reference range of 45 and not flagged but it's got me spooked.

    I was on Zometa (every 6 months - had 3 infusions) but stopped after my last one in July on advice from my ONC who told me my bone scans were good and the Zometa would have no measureable benefit in my case.  I should have had another infusion in January if I had stayed on schedule.

    Now I'm wondering why did my CA 15-3 levels change so dramatically?

    I see my ONC again next week (Feb 29) and I will take my test printout with me and ask him (I check my results online 2 days after testing - in hindsight maybe not such a good idea?).

    This July I will be 3 years from DX and I thought I was doing so well and now this....

    I'm hoping that something else may have caused the elevation - I'm dieting and may have been dehydrated? or my recent breast reduction (01/12) may have affected benign calcifications in my right breast?

    Should I ask for a retest or wait the 6 months doing nothing but WORRYING to see what happens on my next scheduled blood work up?  I'll aslo be having a chest xray and mamagram at that time too (now only done yearly).

    Any suggestions?

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  • kt1966
    kt1966 Member Posts: 1,326
    edited February 2012

    Hi Marie. Sorry you have this worry, I know what its like!

    Try not to freak out- one day at a time etc. It may be a simple inflammation somewhere in your body has pushed the markers up.

    I know when my markers first went up, they didn't want to jump to any conclusions on that alone- they look for a trend over time (months). If it keeps going up that's when they might investigate further.

    Mine went up to 55 first & nothing was done then, it was when they'd climbed to the 200's over a few months I started having scans etc.

    So the marker may have already gone down for you (hope so) so the next step would be to retest & see what the trend is Smile

    Hoping for good news for you and that you can put it out of the front of your mind for now! 

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  • MarieK
    MarieK Member Posts: 911
    edited February 2012

    KT1966 thanks for the reply and your positive encouragement.

    I've been doing a bit of reading (very scary) but because everything else on my blood test is somewhat normal I'm going to put this aside for now and not get crazy.

    I like to say "I'm not going to worry until I have something to worry about".

    One interesting article did associate an increase in CA 15-3 levels with pulmonary fibrosis and radiation neumonitis. 

    I did have 28 rounds of radiation and at times have had a shortness of breath (thought it was from my tight chest with implant) and cough.

    So to be on the safe side I might just ask my ONC to do my chest x-ray a bit early.

    If that comes back normal then I'll ask for a retest of my blood work to check the levels again.

    Thanks again!!

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  • MarieK
    MarieK Member Posts: 911
    edited February 2012

    KT1966 - did you make a decision regarding the OOPH? 

    I was all set to have one the summer of 2010 (1 year after my DX) but I asked for blood work to measure my hormone levels before the surgery.

    The results showed that I was in full menopause.  Obviously brought on by chemo!

    I chose not to have the OOPH.  If my ovaries were not functioning why take them out?

    Even after it was discovered that I was in menopause my ONC still has me on Tamoxifen.

    It's been almost 2 1/2 years since I last had a period and I don't miss them at all!

    Good luck with your decision!

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  • kt1966
    kt1966 Member Posts: 1,326
    edited February 2012

    Hi Marie. Glad you feel a little better. Good idea to talk to your onc & get an x-ray if it helps put your mind at ease.

    Its totally natural to wonder about all these symptoms and worry too- hard not to. But a lot of the time there really is nothing to worry about.

    I've decided not to do the ooph for now- I'd rather not get rid of body parts that are completely healthy! I hate having to have zoladex but if it keeps cancer away I'll do it...hopefully I'll go naturally into menopause in the not too distant future.

    (my onc say ovaries are good for more than just estrogen, they may help in other ways)

    I know what you mean about periods- yay!

    I hope your appt with your oncologist goes well on Wednesday Smile  

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  • kt1966
    kt1966 Member Posts: 1,326
    edited July 2014

    An update- after 3 years on a new regimen of zoladex & letrozole to combat rising tumour markers with NED, I have now 'graduated' to stage iv.

    I had a PET-CT scan this week when a core biopsy of an enlarged lymph node came back positive for bc.

    Turns out I have multifocal bony skeletal, mets to anterior mediastinal lymph node, ? L) lower lobe mets (lung) & indeterminate liver lesion.

    My tumour maker at the mo is 163...

    So- all in all, I'm glad I had those 3 years on Z & letrozole- I may have progressed sooner otherwise. 

    Now its on to some other treatment, chemo I think. I'll see the onc on Monday.

    So- in my humble opinion tumour markers work for me...

    All the best to you all, & I wish many more fun filled days for us all

    kt

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2014

    I'm so very sorry for your "graduation."  I've never once had a scan of any type, or a tumor marker blood test. So, as you said, it's good that you do have those, and have been in treatment. Hugs for whatever is coming next for you as far as a change in treatment.


     

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  • Maureen813
    Maureen813 Member Posts: 2,893
    edited July 2014

    sorry to hear of your progression. A place no one wants to graduate  stop by the sIV threads. A great group of very knowledgable women 

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  • kt1966
    kt1966 Member Posts: 1,326
    edited July 2014

    Thanks whatnow & Maureen.

    I will drop by the Stage IV threads sometime soon... its so good to have this board :)

    kt

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  • Mobmomma
    Mobmomma Member Posts: 1
    edited August 2017

    Oh my.. I'm so worried.
    Before I leave Brazil in 2012, my auntie, that is a doctor, asked me to do the CA15-3. The result was 30. Since then every year I do the same test, and the result varies from 28 and 30.
    This month I made is again, and it came 37. Just had the mammography last Friday, and still waiting for the results, although I don't feel any node...
    How is the process? If it can be removed, will I need to have the chemo anyway or it can be enough?

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  • MarziaManconi
    MarziaManconi Member Posts: 1
    edited December 2018

    Hi Mariek, sorry to ask but I was reading your story and a question came to my mind as I have recently had surgery and now doing RT and hormone therapy.

    From what I understand you already had bone mets when diagnosed (even though only one lymph node had been affected) - is that correct?

    Sorry but I am just debating whether I should do a bone scan (which my oncologist did not refer me for).


    Thanks

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