Tumor Marker - Talk Me Down Please

Lynwaz

Well when I was DX with stage 4 - metastasized to liver- "innumerable masses of lesions" throughout entire thing. Totally unexpected. I had no "symptoms" and had been given 98 % chance of no recurrence...(ERPR+   HER2-)

I started chemo Feb 11th (Taxol weekly, Avastin added every other week) My original CA 27-29 was over 1000. This week--June 17 -  it was 133.5  But LAST week it was 131.1! (lowest ever since dx). Am I worried about a 2.4 pt rise? Well, a little bit, obviously, since I'm here on the board

. But when I see people being upset about a 40 - all I gotta say is - I hope to heck I get to see a 40! It's all a matter of perspective. I saw the PA today - my onc will be back next week. Unless it rises again, I don't think he's going to see this as any big deal & I'm doing my best to view it the same way.

 The best news for me is that I've had spikng liver enzymes twice (iinto multiple 100s) for no apparent reason (multiple tests all proved negative) & now they're dropping, also for no apparent reason. Second time this happened since DX.  One enzyme is finally down in normal range & the other two are headed that way. 

Cancer is a puzzle. Someday they'll figure it out. The sooner the better for us all. In the meantime I intend to enjoy every day. Wishing you all the same.

Lynwaz

weety

My old onc, who did TM's, retired and my new onc doesn't believe in them.  At first I was a little upset because I was so used to getting those 3 month numbers and feeling reassured when they weren't any higher from the previous time.  But man oh man, the anxiety was terrible!  Now that I'm not worrying about them anymore, I feel like I can be a lot more calm about my appts.  For me, I think, it has been better NOT getting them.  But my onc did say he wouldn't mind doing them once a year since I've already had baselines done. . . That's coming up soon and I'm not sure whether I want to go there or not. . .I still have a month to decide. . .

kira1234

AbbysMom, I really understand how you feel. I have them done every 3 months, and it really scares me each time. My CA27-29 is going down, but my CEA is going up each time, it really freaks me out, but my Onc says the same as yours don't worry.

NormaJean65

calamtykel....

There is no need to thank me as I haven't forgotten all the encouragement I received so think of it as passing the torch to you.  It here that I learned many things can effect the CA 27.29 and that it is only a tool used & not always precise for everyone.  We are all made differently, look at life differently and handle stress differently.   Did you ever call about your results??  Take care, chin up and hang on tight.   Everyday has sunshine, but some days it's just harder to find !!

LakeArrowheadgirl

I just finished last (6th) round of TC on 1/19/11 and was ready to start celebrating when my Onc. called and told me my CA27.29 was elevated to 49 and wanted a PETSCAN. I am devastated! I asked him what my previous reading were and he said 38 prechemotherapy and 36 after first chemo. He never checked them again til now! Can infection, Chemo, Neulasta, or Meds cause this? He wasn't reassuring and said no. I was stage 1 going into this. Help! Has anyone else had false positives in the home stretch of chemo?

LRM216

Lake:

I just want to reply that I have never even heard of any testing tumor markers until at least minimum of 6 wks. AFTER last chemo.  My onc waits 3 months before testing tumor markers again.  I am also very aware of other onc that do the same.  I would seriously consider talking to yours and finding out why he chooses to do tumor markers immediately after chemo, when all of blood and cell counts are still out of whack?    Good luck, and sorry you are going through this  - you should not be.  You may want to consider a new onc since this one is taking tumor markers at the wrong time and panicking over a marker that is showing 2 points over norm?????  Somethings not right here.

LakeArrowheadgirl

LRM216, Thanks for the encouragement. I have my PET scan tomorrow, and after 3 days of depression and crying I was finally able to convince myself this is nothing. I just hope I don't get false positive PET SCAN results, which I have read are also not very accurate, especially this close to Chemo. I have read alot of posts here from other gals, whose doctors have told them that chemo, infection, and inflammation can cause them to raise. Thanks to everyone for the encouraging posts. 

Anonymous

I just saw this post and for any of you who know me, I think you know I have been going for the tumor marker record.   The lowest mine ever went was 18 and that was when I was still doing the hormonal treatments, aromasin took them to there.  I think when my BC was lst discovered they were at somewhere like 129.   I know many oncos do not put a lot of stock in the test and don't even do them.  My onco is always saying I should not put too much emphasis on them, but I think he just tells me that so I will not go into a panic and really even though mine are off the charts, I no longer panic that much because I am used to them being really high and amazinging I still feel good.  However, no matter what he says, they are pretty accurate for me and when they climb, you can bet we will see new progression in the next scan.   However with others, the numbers can go up and their scan will either be better or stable.....so who knows.   Anyway, mine are now at 6,186.7 (I think...would have to look it up) ...don't gasp.  I am happy.   That is almost a 1500 drop which means most likely the adriamycin is working for me and if it is, this will be the lst chemo to have worked for me in 2 1/2 years.   They were 7,668 three weeks before that.     Only 6,156 some to go and I will be in normal range!!!  I used to also have a cell search done, but the ins will no longer pay for it.....it was always 0.  

I disagree with your doctor...infection, medications and all sorts of things can cause the numbers to elevate. I hope all turns out well for you Abbysmom....you also Arrowhead. I like having the CA27.29 done because it gives me something to go on, but the scans are by far the best diagnostic tools....there you can actually see what is going on.

bak94

Lake-I had my tumor markers done pre chemo-57 then a week later they were 61. Did ac followed by abraxane. My doc also did tm's the day after my last chemo, they were 56, I was highly disappointed but doc was not concerned, he said they could be high due to chemo (why do them then?!) Had them done probably about six weeks later and they were 37 and just had them done again I think it has been another 6 weeks and they are 31, so I think chemo can definitly affect them. Oh, all my scans have been clean since about halfway through neoadjuvent chemo.

Marybe-How are you feeling on adriamycin?

Anonymous

BaK94, How am I feeling on it?.....amazingly well.  I was really scared as to what it would do to me since I know people who have done it and my one friend was so sick until they finally found the right combo of anti-nausea meds for her and then of course I know women from the threads and the SEs they have had, but it was to the point where we had to do something because the tumors in my liver are very large and nothing seemed to be working.   I am doing the lower dose weekly as opposed to the regular dose every 3 weeks.....it was explained to me that this is just as effective and the SEs are not as severe.   I really have no SEs, other than hair loss and the fact that sometimes I feel really really tired and just come home from work and go to bed.......like today.   I get the treatment on Wed. and get steroids in with my pre-meds and Friday afternoon seems to be when I am the most tired and I am sure it is the steroids wearing off.  I am losing hair, but people who don't know me would not know (I had a lot of it) and I would say in about 6 more wks, I will be bald.  I figure that's no big deal if it works and since there was such a big drop in the CA 27.29, we are assuming it is.  I am thinking this really is not a bad chemo at all so far as SEs go, but know it is because of the way it is being administered. You mentioned being on Abraxane....now that was the one that almost did me in.....had every SE imaginable and my nails are still not back to normal after 2 1/2 yrs....did 22 treatments of it and quit....BUT it took my tumor markers down to 89 and they had not been there for a long time before that.

Congratulations on your clean scans and I think the fact that your numbers are down to 31 is great. 

Sorry to have sort of gotten off the topic here, but wanted to answer your question, Bak. Hope the PET went smoothly today, LakeA.

LakeArrowheadgirl

I had my Petscan today and it was Normal! Yeah! I can finally celebrate finishing chemo. I hope nobody else has to worry unnecessarily over tumor markers! Obviously they are anxiety producers, and I am disappointed my Oncologist was not more encouraging instead of freaking me out. My heart goes out to everyone here who is battling breast cancer. Good luck to everyone.

bak94

So glad to hear that Lake!!!! Yipeeee!

Marybe-glad you are doing well on adriamycin! First time I had it I liked it much more than the evil taxol:) Second time I had it it was a bit rougher on me but tolerable.

delorisann

Hi, well I dont hardly ever post on here, but I do read a lot. I was first diagnosed with BC in 1990 and then again in 2000. Both times had lumpectomys and radiation treatments with arimidex.. In 2008 I fell and crushed a vertabrae and inside it was a malignant tumor. Mets from the breast cancer they say, Now I have mets in my hips , both femur bones and my spine. Had zometa for four years and now I am on faslodex. I just keep praying it will go away but I guess it wont just up and go away. My tumor markers in Dec was 43 and this month 56 and the doc said not to be to worried about it. He said I seem to be stable and my quality of life is ok for now but to remember if I get worse pain he has other options for me. I take Hydrocodone for pain a  lot and it helps but I get so tired of feeling tired and sleepy all the time. ( I can sleep when I die) Just wanted to vent a little I guess and I know your all so kind and caring. I would like to be a part of this group now,I need encouragment and help dealing with it all sometimes. My hubbys first wife died from Liver cancer and I hate him having to go thru this again, so I dont talk to him much about things so as not to worry him. Thanks for listening.. seems like a  nice place to come and talk and listen..

Deloris  Blake

TAPPY

 How often do most docs do this test as part of the follow up ?

Many things about tomorrow I dont seem to understand. But I know who holds tomorrow and I know who holds my hand.
Diagnosis: 9/9/2011, IDC, 2cm, Stage II, Grade 2, 1/5 nodes, ER+/PR+, HER2-

greenfrog

They aren't incorporated into standard follow up here in the UK unless you have already had elevated markers. I only know of one woman who has them checked regularly by her onc but she was Stage 3 at dx and has had a local recurrence.

My friend was Stage IV from diagnosis and her tumour makers were completely normal in the early days - eventhough she had multifocal LBC that had spread to the liver. I know my onc doesn't put a lot of faith in them.

Eliza2009

My CA25-27 went from 45 to 55. The oncologist said they don't rely on them, and if they bother me, he can stop taking them. Jeepers.  That shut me up. I asked what they do rely on, and he said he relies on what patients tell him. So now I wonder what I'm supposed to be telling him.  And now I have pain in a hip and one knee, but the pain goes away when I walk.  I think I become a hypochondriac for two weeks prior to every oncology visit.

VJSL8

What my oncologist told me was that ethically he would order a scan when my markers are 50-60 but he didn't expect to find anything. He said he doesn't worry about markers until they are 80-90. I found that just by going to a different lab--my markers went up 10 points too. Good luck!

Anonymous

Two weeks ago mine were down to 2,373 and I was elated.....they have gone to that from 7.668 since Dec. 7, so I am hopefull that I may be seeing numbers in the 1,000s in another week or so.   Hope springs eternal.   Onco is going to keep me on low dose Adriamycin until we see heart damage or scans show progression.   Marybe

Meschell

I need help and support here. My CA 15-3 is 36. I am scared to death. Should I even be worried about that or should I try not to panic. I go to the doctor at 11:00 today and It is all I can do to even make my self go because I am so afraid. Can any one help ease my anxiety?

christina1961

I just got mine by phone and they told me anything below 37.7 is normal.

christina1961

The test I had was CA 27/29 and they told me that anything under 37.7 is within the normal range.  Mine rose a little to 19.2 from 17.7 three months ago but the nurse said that wasn't anything to worry about as fluctuations like that are normal.

HLB

Meschell how did your appt go? I hope everythings ok and the marker was nothing to worry about!

netty46

what did the doctors tell you so far?

netty46

Meschell what ddi the docotrs finally tell you about the ca-153?

netty46

Good luck I have asked alot of questions here and it seems its hard to people to really help or answer questions directly . 

netty46

Lakearrow   Going thru the same thing now and the some people here have no knowledge of markers or  they just dont answer questions.

netty46

eliza mine were   cea0.5,   ca153 36.1    ca27.29  47.  im on chemo now. chemo has shrunk my breast residual tumor.  i had bone, mri, pet, mri of breast, thorax ct , all with contrast just withing 60 days ago. now they want to stick in 2 machines gain .  more radiation!  one number is 1.1 over    which is the  ca 153.        i have surfed around and have yet to find someone tht has gone thru this testing with such low numbers..

littleangel

Not sure if anyone will read this or not; however was looking up information on CA 28-29 and found this site.  I was diagnosed with breast cancer before my 21st birthday and have been fighting a long time.  Before the diagnosis my doctor did the above blood test and it was normal.  Since that time every one of them has been normal even though I have stage 4 Breast cancer.  I just thought it important to tell all of you so that even if it is normal and you think there is a problem get some other tests done.  None of  my doctors' rely on it for me.  I hope this helps at least one of you out there. 

bluepearl

The only thing tumor markers do is scare the shit out of you. John Hopkins doesn't do them anymore.....and neither do I. Littleangel: I

am so sorry you face this at your age. Hard even to be older like me, but you........new stuff is coming up in research all the time and am hoping you get to go into trials as well. I hate cancer but never more so than when it strikes a young person. xoxoxoxoxox

Sloan15

Just wondering if anyone has elevated CEA markers and what is going on with you. The last post in this thread was a long time ago. I know a lot of docs don't do tumor markers, but mine did. They were only slightly elevated at 5.2, but higher than from the last few times where they were 4. (My CA15-3 was down to 20, and that is in the normal range). Now, I changed MO's, and the new guy said he is going to follow them for a while since I had the markers done (but he doesn't normally do TM without symptoms). So, I wasn't going to post anything because I felt guilty that my markers were only slightly elevated and some people's were higher, but you know, I'm still scared. I'm having what feels like skin irritation in my affected armpit, too, and that adds to my stress. I'm going to take the advice of someone on an earlier page, and I don't want to know my numbers anymore. This is such an old thread that I feel like I'm calling out Help into deep space.