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Tumor markers elevated, a little worried right now.

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  • HLB
    HLB Member Posts: 740
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    GREAT NEWS!!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Thank you, HLB!!

  • ruthbru
    ruthbru Member Posts: 47,147
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    Congratulations and WHEW!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Thank you, dear Ruth. I was very scared but so preparing myself for whatever happened. After being on this wonderful board for many years and reading all the positive and informative posts, I knew I could get through whatever was thrown my way. And I have a very strong faith, knowing that I am not always in control, but I have been given a repreive for now. I just want to be able to stay here and be an encourager to others as you all have been to me. Ruth, you have set the bar with your wonderful and encouraging posts. Thanks so much!!!! God bless you all!!!

  • ruthbru
    ruthbru Member Posts: 47,147
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    It really is an awesome sisterhood where we can all 'pay it forward' and backward too. The one good SE of the whole thing!

  • diana50
    diana50 Member Posts: 253
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    hi all

    good discussion about tumor markers.  this is my experience with CA27.29.  i have been at this for 10 years and wanted my onc to do the marker every 6months.  10 years ago when i was on TAC my highest value was 32. afer finishing treatment...chemo, rads..and while on arimidex, my marker has always been in the high teens and low 20's.  i have not stressed about my markers; and for me i like having them done because they give more information and for me i like to see the trends. 

    last october my marker elevated to a high 22 and in april it was 34.  still in normal range but the trend was going up.  so my onc said; lets test again in four months.  so in early august it had doubled to 66.....and then she did another retest 10 days later...and it had jumped to 82.  i guess when the marker doubles...or drastically changes from baseline...it is a concern.  i have not been doing anything different the last 10 years...lol  at anyrate; i had some pain in my hip...(however, i am 60...and a cyclist) so wasn't too concerned but she did a MRI.   no cancer but a torn tendon.  so, now she wants a PET/CT scan.  haven't had a PET for a LONG time. 

     for me, i like the test done; and i think since i have been NED for 10 years....and have done the same blood work over and over....it gives me and my doc more information.  i know for some people the markers are not helpful and they don't do it. 

    so, that is all i know.  haven't gotten the PET scan scheduled yet.  i actually will be interested to see if there some cancer and if the tumor marker...in my case....was truely giving a red flag.

    hang in all****take care

    diana50 

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, Diana50!!! Wow, what a story with your tumor markers! I am thinking that your torn tendon could have caused an elevation inthe CA 2729, because it can react to the slightest inflammation in your body!!! Please let us know how you are doing!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Also, aren't MRIs more reliable than Pet/ct scans?- less false positives ??

  • diana50
    diana50 Member Posts: 253
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    kindergarten

    no, my doctor did a blood test called Sed Rate which meaures inflamation in the body and it was normal.  the hip has been bothering me for a over a year....the tumor marker bumped up april and in august..because of the pain she did the MRI on the hip because that is the only symptom i have except for the change in TM.

    a PET/CT scan is for whole body.  it scans the whole body with a tracer that finds cancer if the cancer is measureable.  MRI usually for specific areas i think.  MRI can also show false positives.  my eperience is that do the PET scan before treatment...to see if there is cancer other places...after treatment....depends on the onc...and if there is a specific reason to see if there is cancer going on. they are expensive and not always readily authorized by insurance companies. 

    keep on**

    diana

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Diana, you have done your homework, you are a wealth of information. I so appreciate it. I have become a little lax on researching BC stuff lately. I never heard of the Sed Rate blood test, but I will certainly ask my onc about it. I have lymphedema and have had two bouts of cellulitis, so I am thinking I have inflamation, so the test would be very helpful. I have never had a pet scan. I hope your pet scan shows nothing, and that you are having typical problems that go along with cycling. Hope your torn tendon heals quickly as well. But please keep us posted. It sounds like you are on top of everything!!! Have a great Sunday!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Karen, I have been thinking about you, please let us know when your bloodwork results come back!!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Love4, Yes, your detox worked for me as well, plus stopping my antibiotics. Thank you and it is great advice to use everytime before we have bloodwork!!!! I am not going back on my vitamins either, just going to get my nutrients through spices, and nutricious food!

  • 3boysmom39
    3boysmom39 Member Posts: 10
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    Hi all....nurse called this morning, labs all in normal range again! Yay! CA2729 back down to 37.4 from 50 ! now relieved...until next scare, right? Thanks for checking on me...keep in touch! Karen

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Karen, I am doing the happy dance for you!!!!!

  • txmomof2
    txmomof2 Member Posts: 48
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    I just saw my MO for the 2nd time yesterday.  My test came back at 14.  What does it even mean?  If there isn't cancer anywhere, why wouldn't it be 0?  What all does it measure?

  • onestepatatimetosurvive
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    I am really confused and hoped someone here could help me.  I have just finished my chemotherapy and I am getting ready to begin radiation.  However, when I talked to my onc about my tumor markers, he told me that mine were in the normal range BEFORE my mastectomy.  So...if I had a 2cm+ tumor and 10 positive lymph nodes, how in the world were my markers in the NORMAL range?  Also, if they were normal then, how can I trust them to show a recurrance before its all over my body?  I am so confused.  Can anyone help me understand this?

  • wrsmith2x
    wrsmith2x Member Posts: 127
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    Onestepatatimetosurvive,

    That's the $64,000 question, isn't it?

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, everyone, I know myself how confusing the whole tumor marker issue is. I have had 4 oncs in 8 years, the first three did not test them, because they said they were unreliable and caused stress. John Hopkins does not use them. My onc here in CA, just wanted a baseline, and of course mine were out of the normal range the first time. I had repeat bloodwork and my Ca2729 and CEA all came down. My onc was very satisfied with that, because she looks for the trend. Why, if the cancer is gone, should it not be at zero. that is the million dollar question. I wish I knew the answer, hopefully someone will come along and have better answers. Blessings and hugs to you all!!! Kathy

  • meric0025
    meric0025 Member Posts: 1
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    I keep telling my Onc that tumor markers are going to cause me to have a heart attack. This test stresses me out SO BAD.  In June my TM's went up 40 points and 50 points. I was restested on Aug 6 and my TM's went down 20-30 points. I also had a scan on Aug 6th that showed I was not only stable, but I was improving (I'm stage 4). I just got my results back from my last TM's taken on Aug 27. My nurse called and said that my TM's went up slightly ( 60 and 50 points), but there is no reason to worry. She said the dr is not worried either. She said TM's fluchate and that's the nature of these test. She said they are a huge stress to patients. I think we can all agree on that. So, I have pretty much been going up and down since June. Everything continues to be going fine, and I'm making improvements. I would be a whole lot more worried if I didn't have my scan recently.  I learned the hard way that TM's do go up and down, and if they go up it does not mean the cancer is back or getting worse. Hang in there.

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Meric0025, thank you so much for your post. We all need that positive reinforcement. This Thread has been so informative and helpful. My onc is amazed by how much I learn BC.org. Thanks again all!!!Smile Kathy
  • MarieK
    MarieK Member Posts: 467
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    Kathy thanks for starting this discussion AND following up with your positive results.  And thanks to everyone else for sharing their experiences and support on this topic as well.

    I'm back on BCO doing more "research".

    My TMs have been low but in Feb the CA 15-3 test was 35 and had doubled from the last test.  It was still under the acceptable level of 45 and I had just had reconstructive surgery in Jan so I put it off as inflammation causing the test to be inaccurate.

    I see my ONC next week (Wed) and so I've just gone through the pre-check up testing routine - mammogram, chest xray, abdominal and pelvic u/s and bloodwork. 

    I thought everything was ok and actually had forgotten about my increased CA 15-3 from Feb but on Thursday my GPs office called wanting me to come in and discuss my recent lab results. 

    Uh oh.

    I have online access to my bloodwork results so I of course popped on there to check them out.  Everything is NORMAL except for the CA 15-3 test which has doubled again to 75 now. 

    I was just going to wait and follow up with my ONC on Wed but I thought I'd go see my GP anyway for a "chat" and see what he has to say about this. I see him Monday afternoon.

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

    But my last 2 tests have increased to 35 (2/12) and now 75 (9/12). What's going on?

    OF COURSE I'm stressed, worried and second guessing all of my decisions.  

    Wish I'd seen this tip about detox before the bloodwork!

    I've chosen to stay on Tamoxifen even though I don't have periods and was offered AI.  

    I didn't have an OOPH after bloodtests confirmed I was in menopause.

    AND I stopped gettting Zometa infusions on advice from my ONC.  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 again why did my CA 15-3 levels increase again?  Will the drs even do anything at this stage or do my levels have to be in 100s? 

    I don't expect answers on here but I will follow up with a post after my drs visits this week.

    Thanks for letting me share...

    Marie

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Marie! Thank you for sharing!! I don't think my onc tested the CA 15-3! But I am sure someone will come along with answers! I do know after talking with my onc that these tests are so unreliable! I had never had them tested before! I have had 3 previous oncologists!! Please try not to worry and keep us posted!! My onc also said that inflammation, infection and even stress can cause elevation..

  • MarieK
    MarieK Member Posts: 467
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    Saw my GP yesterday and he confirmed the office called because of my increased & flagged CA 15-3 blood test.  

    He did a quick feel around and asked me if anything was bothering me.  I told him my neck was still bothering me but that's been going on 2 years and I've seen him many times for advice on that.  I also mentioned that my bones ache constantly but I put that down to Tamoxifen side effects and sometimes wearing an under wire bra.

    I also mentioned that the end of my shoulder bone was killing me lately - almost like a bruise - and he confirmed that there is a bruise on it.  

    I felt really stupid about that one but when you are in hyper sensitive worried/stressed mode every little ache and pain is suspect. 

    He told me to discuss a PET and Bone scan with my Onc on Wed.  Also taking some anti-inflammatories and retaking the blood test in a month.

    I'll let you know what the Onc says after my Wed appt.  Thanks for letting me vent/share on here.... 

    Marie 

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, MarieK, just checking on you! Did you speak with your onc? Please vent and share anytime !!!!!

  • MarieK
    MarieK Member Posts: 467
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    Thanks for checking on me Kathy!  That was so sweet of you...

    Yes I did speak to my ONC.  I had an appt on Wed afternoon and he didn't seem that concerned about my elevated tumour marker.  I pointed out to him that it had doubled since Feb and Feb's results were doubled from the prior test.  He tells me that he sees them go up and down for no reason and my numbers were not that high.

    He asked me if I'd been feeling sick or run down lately.  I haven't been sick but I know I don't get enough sleep and should rest more.  He was going to leave it at that and just wait to see me again in 6 months time and see what the bloodwork showed then.

    BUT I mentioned that I'm still having ongoing issues with my neck/jaw/ear (over 2 years now) and since my GP visit (Monday) I've felt an enlarged gland just below my collarbone on my mastectomy side (left).  The Onc felt it too and then suggested that I go for a bone scan and a CT scan and see him again in 2 weeks.  So I've got an appt on Oct 3.

    He said that based on those tests he may or may not send me for a PET scan.  So we'll wait and see what's what at the next visit. 

    Since Wed's ONC appt I had a bone scan at the hospital yesterday (Friday) but no appt for the CT as yet.  

    To be proactive I've been continuing to take Advil and Aleve - 2 in the morning and 2 at night - and increased my water intake.  I'm "trying" to drink 8 glasses of water each day on top of what I normally drink - juice, iced tea and coffee.  

    And speaking of coffee I've decreased my caffeine intake to 1 cup a day.   I tried to go cold turkey and stop drinking it altogether but I got a horrendous headache and had to have a cup just to get through it.  I'll do the 1 cup a day for a bit and then try again to quit. 

    Today I don't feel the enlarged gland 

    So that's where I'm at...waiting and wondering and trying not to worry....hoping for good test results. 

    Marie 

  • MarieK
    MarieK Member Posts: 467
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    Oh I forgot to mention that all of my pre-check up tests were clear - Chest xray, abdominal and pelvic ultra sound were all clear.

  • MarieK
    MarieK Member Posts: 467
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    going on Monday Sept 24 for my CT scan - wish me luck!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Marie!! Prayers are coming your way for a great scan. I know everything will be fine. Treat yourself to a nice lunch after wards. Blessings, Kathy

  • weety
    weety Member Posts: 371
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    Marie, Fingers crossed for tomorrow!

  • MarieK
    MarieK Member Posts: 467
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    Thanks for the prayers and crossed fingers!  I thought the CT scan went well - I breathed in and out when I was supposed to and didn't feel claustraphobic at all.

    I now have to wait for the results (of this and my bone scan) at the follow up visit with my ONC on Wed Oct 3.

    Thought I'd share a few things since I've never had a CT scan done before and was caught unaware....

    1.  When the hospital called for the appt I asked if there was anything I needed to do before the appt.  I was told "no, just show up".  So eating and drinking beforehand was allowed and I did.

    2.  I didn't know that I would have to drink 2 cups of liquid in 1 hour before the test.  I've worked on this for years - keigels and such - but I still had to go to toilet several times (which is ok to do). 

    3.  I didn't know that I'd have to have an IV inserted.  I've got terrible veins and they ended up using my left hand (same side as I had nodes removed).  Had I known I would have drank more water the day and morning before the test and worn a glove with a hot pocket to prep my right hand.

    4.  The contrast solution they inject at the time of the scan really hurt like a "burn" as it entered my IV site and made me feel all warm and tingly and like I was peeing myself.  Apparently this is normal...

    5.  I didn't know that I'd have diarrhea after the test.  Apparently this is normal too and most likely happens in the 24 hours after the CT scan. 

    My dad is visiting from another province and so I'm going to enjoy the rest of week showing him around Vancouver and NOT WORRYING about the results until Oct 3.

    Have a good week everyone!

    Marie