Tumor Marker - Talk Me Down Please

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AbbysMom
AbbysMom Member Posts: 17
Tumor Marker - Talk Me Down Please
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  • AbbysMom
    AbbysMom Member Posts: 17
    edited March 2008

    I know there have been several posts about tumor markers in the past, but I would l really like to hear from some of you who have had a similar experience....

    Had my first lab work and Onc check-up appointment two weeks after chemo (was supposed to be a month later), all looked good but CA 27.29 was 46.  The doctor said not to worry -- so I promptly started to worry and haven't been able to stop. 

    Just wondering if anyone else out there had elevated numbers so soon after chemo (with neulasta and neupogen)?

    Actually just asking this questions has made me feel better.  It's so hard to keep our nagging fears to ourselves and be brave for the rest of the world.  I am so gald there is a place like this to let my guard down.

    Happy Friday to all of you!

  • punkinfish
    punkinfish Member Posts: 27
    edited March 2008

    Hi !!  I know what you mean about not being able to stop worrying.  I've asked about tumor markers on here as well and was told that it's not unusual to have markers be up some after chemo.  My CA 27.29 has always been normal (even with the breast cancer ) But my CEA has given me fits, being elevated.  Have had colonoscopy, PET scans, can't seem to find anything wrong, please Lord let it stay that way !!  So the onc said we'll watch it.  Anyway.....please try not to worry so much (easier said than done, right?!) Hope I've helped somewhat.  I'm sure some other ladies will be along to help calm your fears.   This site has been a real blessing and continues to be so. Hang in there !! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Abby:  Many things can cause tumor markers to become elevated.  My onc does them all the time and if it is the tiniest bit elevated, I used to become so worried and concerned.  I have done alot of research on tumor markers, and the one thing I learned is that chemo will cause the markers to rise. 

    So sit back and take a deep breath.  Im sure all is fine.

    Nicki

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2008

    Just bumping this up so that a real post is at the top of the list and therefore on the front page forum list of the discussion board, rather than the spam post from that scumbag Steve Chang (aka Sophia). 

  • janekhaldy
    janekhaldy Member Posts: 33
    edited March 2008

    So glad to see you post. My first followup had my ca27.29 at 60 and the doctor sent me for a bone scan-i am anxiously awaiting the results and am scared stiff-did your onc send you for any tests? I am still trying to figure out what is considered really high? 

  • AbbysMom
    AbbysMom Member Posts: 17
    edited March 2008

    Thank you all for responding; it helps to know I am not alone.  My onc really downplayed the numbers and told me not to obsess about it.  So hard to do!  She said we'll check them again in two months and, if need be, follow up then.

    Normally I would be okay with this, but being one of the very few who have had an isolated axillary recurrence after mastectomy (originally Stage II/Node Negative), I am scared to death that, once again, what should be nothing, will turn out to be something. 

    If I think about the upcoming appointment with my Onc, I can feel my heart beating faster and the fear rising in me, almost like a panic attack.  Anybody else out there have this same sort of feeling?  I used to be so normal, then breast cancer pulled the rug out from under me, twice.  I swear, I wonder where that plain old normal woman went....I barely remember her. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2008

    Anxiety.  The gift that bc keeps giving.  I still have lots of anxiety, especially when something might look abnormal.  And its hard to talkk yourself down.  Hugs. 

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited March 2008

    What are the normal ranges for the markers?

    Teresa

  • LaurieL
    LaurieL Member Posts: 88
    edited March 2008

    HI,

    I was told anything under 40 is "normal" for the CA27-29.

    Laurie

  • sflow
    sflow Member Posts: 297
    edited March 2008

    My onc says under 35. I have a question--can you have totally stable, normal tumor markers and still have a cancer in your body? Mine have been 12 for a while, but I have to go for breast sonogram as onc says my scar and around it feel lumpy.

  • maryhannah
    maryhannah Member Posts: 17
    edited March 2008

    Abby's Mom,

    Please don't get too concerned about your tumor markers.  CEA: 2.5 is the outside normal range for non-smokers, 5.0 for smokers; CA 27-29: 37 is the outside normal range; HER2 serum: outside normal range is 15.  I had mine taken immediately before beginning chemotherapy and they were slightly above normal: CA 27-29 was 43 (had it done again and it went to 45); HER2 serum was 16; CEA was 2.5.  During the course of my year's treatment I had just about every kind of scan, other than bone scan.  PET/CT; lung CT; brain MRI with contrast, and three mammograms and everything is normal.  My numbers did go down during chemo and herceptin, but never very far down, and at the end of my year of treatment my CA 27-29 went back to 37.  It's twenty months now and I'm doing fine.   As most doctors will tell you tumor markers are not reliable for detecting recurrence--or at least not with numbers like yours, which is not that high.  What they are reliable for is creating anxiety.  You may just be that odd person at the high end of normal or you could also have one of the many benign conditions that give you elevated markers.  Most doctors don't get worried unless your numbers double and then double again.  I wish I never had mine taken (or at the very least I was never told about them.)

  • sahalie
    sahalie Member Posts: 2,147
    edited March 2008

    Abbysmom,

    I also get a more rapid heart beat and anxiety before my oncology appt. 

    Sometimes I can feel the anxiety feelings just reading certain things here. 

    Posters refer to us being on a roller coaster ride and I agree.

    About the tumor markers, I've been wondering what the difference is between the CA15-3 test and the CA 27-29 so I googled and up came Cancer.org and a great explanation so now I understand.

    Here is a part of what I read and I hope maybe it will help you and others who have wondered also.

    *

    "CA 15-3: CA 15-3 is used mainly to monitor patients with breast cancer. Elevated blood levels are found in less than 10% of patients with early disease and in about 70% of patients with advanced disease. Levels usually drop following effective treatment, although they may spike in the first few weeks after treatment is started, a result of dying cancer cells spilling their contents into the bloodstream.

    The normal level is usually less than 25 U/mL (units/milliliter), depending on the lab. But levels as high as 100 U/mL can sometimes be seen in women who do not have cancer. Levels of this marker can also be higher in other cancers and in some non-cancerous conditions such as benign breast conditions and hepatitis.

    CA 27.29: CA 27.29 is another marker used to follow patients with breast cancer during or after treatment. This test measures the same marker as the CA 15-3 test, but in a different way. Although it is a newer test than CA 15-3, it does not appear to be any better in detecting either early or advanced disease. It may be less likely to be positive in people without cancer. The normal level is usually less than 38 to 40 U/mL (units/milliliter), depending on the testing lab. This marker can also be elevated in other cancers and in some non-cancerous conditions, and it may not be elevated in some women with breast cancer."

    *

    I also wanted to let you know my oncologist tells me each time not to put so much emphasis on the number the test comes up with.

    He said he prefers not to use the test for many reasons one being the very anxiety he sees it cause so many of us.

    Ugh what are we to do.  Thank goodness for xanax.

    I wish you all the best!

  • AbbysMom
    AbbysMom Member Posts: 17
    edited March 2008

    Thank you all for your wonderfully informative comments!  It really makes me feel better to hear encouraging words.

    I wish you all good health and happiness!

  • clubmember5
    clubmember5 Member Posts: 15
    edited April 2008

    I know how you feel.  I cry sometimes just because I want my old life back.  My Ca27.29 was 22, then 19, then 27, now 31.  I am 1 year out of treatment after T/C 4 treatments and am on Arimidex.

    I have heard stories about women going through the up's and down's of Ca.27.29 results and you are right, the anxiety never goes away.  I know my markers are all in normal ranges, but wish they would just stay the same!!! I am suppose to have a good prognosis.

     I try to stay positive, but just when I feel good about things, these

     test results come back, just enough to scare the living wits out of you.

    Grade 1, stage 2A, 1 microscopic sentinal node of 7 taken. 

    Mary Jane clubmember5 

  • gennym
    gennym Member Posts: 2
    edited July 2008

    Hi Ladies - I found your site while searching for updated info on CA 27-29.  I wanted to see if the accuracy factor had improved over the past few years.  Apparently it has not.  I am 7 years out from my diagnosis and treatment:  Stage 2B invasive ductile bc - mastectomy right side, 11 malignant nodes, all lymph nodes removed.  Chemo:  cytoxin & adriamycin followed by taxotere, then radiation.  Reconstruction 18 mo. later.  Still have a bit of residual chemo head and let's not even get into the dead sex life...  Ouch!  We've moved several times since then due to hubby's job transfers so I've had 5 oncologists since 2001.  The first 2 did not test tumor markers; the others did.  4 years ago my CA 27-29 was tested for the first time and the rating was 45 (oncologist told me not to worry but of course I was a wreak), then dropped to 37 2 months later (stopped taking Arimidex), then 35 6 months later, then 31 two years ago, and back up to 45 last fall (started taking cholestrol meds a few months prior - might have affected it). Oncologist not concerned.  Current oncologist, who I saw for first time yesterday, is unhappy about that 45 - he is pretty young and new to the practice, whereas the other 2 were close to retirement age.  The very experienced elders never flinched at the 45s and advised me not to lose any sleep over those readings, even though they were considered "high." But the younger doctor describes himself as "aggressive" so today I'm going in for a bone scan.  Yes, anxiety is creeping in - sure do hate that feeling - but hopefully the results will come back just fine and I can try to put this back on the shelf again.  

  • gennym
    gennym Member Posts: 2
    edited July 2008

    Results came back just fine.  CA 27-29 dropped to 33, bone scan clear.  Onc wants to see me again in 4 months.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2008

     gynnym,

    Glad to hear of your negative bone scan, and CA 27-29 results.

    Every test has an upper limit of normal, and maybe you always fall in that upper limit.

    So glad for a lessening of the anxiety: it robs us all so mightily, in spite of our good intent to not allow this.

    Thank you for sharing your situation with us. Being rather unique, it is particularly appreciated.

     Wishing you a lifetime of small and large celebrations.

    Tender 

  • MollyinMN
    MollyinMN Member Posts: 2
    edited July 2008

    Thank you all for sharing your experiences.

    Right now my friend is in a similar situation.  At the beginning of July her Ca 27-29 was 39.  Just last week, before chemo, a test was taken and it is now at 60.

    The onc, through her nurse, did not seem alarmed.  She asked that my friend's scan get moved up to a sooner date.

    We know that 60 is outside of the normal range and changing 21 points seems drastic.

    We will wait to discuss with the onc..  In the mean time, I'll be scouring the Internet for other data points about the range.

    Thank you,

    Molly

  • Daisy2008
    Daisy2008 Member Posts: 1
    edited August 2008

    I just found this web site and after reading all the posts, I feel a little better. I finished my chemo in January and I just had a blood test on Tuesday. Thursday morning my onc called me that one of my blood tests ( he did not say what) have been elevated and since it had been eleavated last time as well, I better  take a PET scan to be in safe side.  I took the PET scan on Friday. I am so worried and I could not function at it if it was not for xanax. Wish you all health and happiness.

    Daisy

  • spiper41
    spiper41 Member Posts: 6
    edited August 2008

    In April I learned I have advanced breast cancer after a mastectomy in 1982 and no treatment in between.  What a shock.  I have been on Arimidex, and every month the tumor markers have gone down.  I just got last week's results and find they are back up almost as high as before I started treatment.  Still not high--CA 15-3 is 27.2 and CA 29-29 is 36.6--both within normal.  But the change in direction freaked me out.  I'm glad to have found this website.  After reading the posts, I feel a bit better.   Right now I'm most freaked out by the fact that 31/2 weeks ago I developed a persistent diarrhea.  I've been tested for parasites and C. diff with all negative results.  My onc wanted me to see a gasteroenterologist right away, but the soonest I can get in is Aug. 22.  I'm pissed, because I don't think my immune system can handle both breast cancer and constant diarrhea, and I wonder if the numbers are proving me right.  Anyone ever have something like this right out of the blue?

  • frustratedrg
    frustratedrg Member Posts: 10
    edited August 2008

    I know how everyone feels.  I get extremely anxious before each test.  Markers ive been told are not a breast cancer screening test but I cant help but get concerned everytime they jump.  I know that benign breast conditions are also a reason that they rise. 

  • DesertRider
    DesertRider Member Posts: 178
    edited December 2008

    Hi Everyone,

    This thread seemed to stop Aug. 23. I finished T/C chemo in Oct and just got results of the Ca27-29 - score 45. I'm worried and wondering if anyone else has had this happen after finishing chemo?

    Thanks & hugs,

    Gail 

  • Oopher1
    Oopher1 Member Posts: 10
    edited January 2009

    If one's CT/Pet scans, mammagrams, and bone scans are normal and blood work is normal,  how is is that tumor markers have a tendency to rise and scare the living daylights out of you?  Mine have gone from CEA which is always normal....CE15-3 which has been 39,39,40 and CA27-29 which has been 38.2, 46.  I do take medications for cholesteral, MS and hypothyroidism.  Don't know if this may have something to do with it or not.  I also have a seroma in my breast due to the mammosite placement for radiation...which they say benign breast disease can cause tumor markers to be up.  I also know that some women with metastatic disease can have normal tumor markers...that scares me.  As the last post was in August 08 ...How is everyone doing?  Any answers to the tumor marker going up? 

    Ruth AnnSmile

    2/2007 IDC 1.1 cm two lumpectomies,SNB plus one node neg, erpr+, her2+, mammosite,chemo-TCH x' one as allergic to carboplatin- TH x's 3 - 1 yr herceptin

  • melmedic06
    melmedic06 Member Posts: 96
    edited January 2009

    tumor markers are like birthdays- you want to make it through another year but you kind of dread everything that goes along with it- it seems some oncologist are true believers in tumor markers and others consider them to be totally unreliable- mine does them every 6 months and it is a chronic source of anxiety for me- my CEA since my original dx in 2004 has been as low as 0.9 and up to 2.6 this last time (3.0 is considered normal) my CA 27.29 started off at 30.0- went down to <15.0 and this last draw was 3.5- yes 3.5 (i am silently cheering loudly!!!)-  i'm not sure if that is really good news or not because my onc always says "don't worry about the numbers" - though i'm sure everyone of us does every single time- keep the faith ladies-

  • donsuzbee
    donsuzbee Member Posts: 129
    edited February 2009

    My tumor markers have been between 23 and 34 for the last 7 years.  In August 08 they went to 52, in October 08 they went to 47 and now January 09 they are at 60.  I am being referred to a rheumatologist as PET scan in September was clear.  Onc says sometime inflammation in the body can cause tumor markers to go up.  I had a bad case of cellulitis in my lymphedema in July 08 - hospitalized 3 days.  I had cellulitis in 05 and the markers did not go up.  I don't know what to think at this point!!!!!!!!

    Any words of knowledge??????

    Susan B.

  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2009

    Susan, hi,

    I don't have any words of knowledge, but wanted you to know that lymphedema is itself an inflammatory condition. Keeping it in good control not only lowers the risk of cellulitis but may lower the inflammatory reaction as well -- a very good thing all the way around!

    Be well, Susan!
    Binney

  • Oopher1
    Oopher1 Member Posts: 10
    edited February 2009

    Hi Susan,

    I recently was also told that caffeine and wine can make tumor markers go up.  

    Here's to good thoughts and low markers coming your way.

    Ruth Ann:)Smile  

    2/2007 IDC 1.1 cm two lumpectomies,SNB plus one node neg, erpr+, her2+, mammosite,chemo-TCH x' one as allergic to carboplatin- TH x's 9 (once a week) - 1 yr herceptin

  • deanie
    deanie Member Posts: 21
    edited April 2009

    Hello Sisters,

    I went through and read your posts.  So many of us with the same fears.  I also am unable to do away with the fears prior to testing and I have been clear for almost 8 years.  However October two years ago my marker jumped to 43.  My Oncologist did not want me to worry but I went for cat scan.  All normal.  3 mos down to 42 then all of a sudden normal again. Now it is back up to 43.  I feel like I am on an emotional rollercoaster.  Everyone one says not to worry.  Easier said than done.  I am glad I found this site.  No one understands fully unless in the same shoes.  I  would like to know all the reasons that tm numbers go up or down.  Anyway I hope this site goes away because a cure has been found and no more women have to hear those dreaded words.  Until then it is a comfort to hear from you all and I wish you all God's Blessings and continued health.

  • hollyann
    hollyann Member Posts: 2,992
    edited April 2009

    My oncologist says she doesn't worry unless they go into the hundreds......Mine have always been in the mid 30's........

    edited to add...Next onc appt next Wednesday...Wish me luck that my markers are still low.....I always freak right before my appointment to find my test results......

  • deanie
    deanie Member Posts: 21
    edited April 2009

    good luck with your appt. breath deep, pray and full speed ahead.  We are women hear us roar.

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