Feeling like a crybaby

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clariceak
clariceak Member Posts: 752
edited June 2014 in Stage III Breast Cancer
Feeling like a crybaby
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  • clariceak
    clariceak Member Posts: 752
    edited October 2012

    I just got a call from my primary doctor this morning.  I have my Zometa infusions in my small town and my onc is in Seattle.  Apparently my  both my tumor markers went up by a few points in August, and he just got around telling me due to communications problems with my onc.  They are still in the normal range - hence the crybaby label I'm applying to myself - but this is hitting me hard.

    At 3 years out, I realize I am in the expected time for mets to occur.  Maybe I was truly stage 4 when I started out and now the Femera isn't working.  Intellectually, I know that a few points rise is nothing but emotionally I am a mess.  I've read so much and realize that with vascular invasion, large number of nodes, including mammary that being in the 70% that make it out alive is not very likely.

    This is my first scare and I now realize that all the information in world does not prepare you for that sickening feeling when they tell you your tumor markers are rising.

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  • MaxineO
    MaxineO Member Posts: 555
    edited October 2012

    I am really sorry to hear this claricek. My onc does not do tumor markers, but it looks to me like they aren't really reliable for a lot of people...I hope that's the case for you.



    It's so scary waiting for the other shoe to drop; or waiting and wondering whether it is going to drop! What is the next step? Another blood test? Hoping for the best for you.

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  • JacquelineG
    JacquelineG Member Posts: 282
    edited October 2012

    Try to focus on the fact that you are still in the normal range, and that there's a big reason many oncologists (including mine) don't do tumor markers. They could be up a few points for many reasons, and chances are they are back down again. I know that you won't really have peace of mind until you know for sure that it's nothing, and i do hope you get the peace of mind soon! Just remember that there are plenty, plenty of women with many positive nodes, vascular invasion, and even mammary nodes (i'm one of those too) are doing just fine. No reason you're not one of those 70%!

    jackie

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  • Celtic_Spirit
    Celtic_Spirit Member Posts: 748
    edited October 2012

    I asked my onc once why she doesn't run tumor markers. She said, "I'll run them if I want a quick and dirty look at how a patient is doing, but if I'm really concerned about their symptoms, I'll order a CT scan." Likewise, maybe your results didn't raise a red flag with your doctors. (BTW, my surgeon ran tumor markers on me prior to surgery, and the results came back "normal," despite my having an 11cm tumor and nine positive nodes!)

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  • clariceak
    clariceak Member Posts: 752
    edited October 2012

    A month ago, I was posting about the benefits of tumor markers.  I realize they aren't accurate for everyone, but I felt that I would rather know sooner if I have mets.  I think Diana is a perfect example.  She found out early, and now she has a chance to zap her bone met and stay NED for a long time.

    This is my first time dealing with the stress of an upward tick in the markers.  I know that it could be meaningless, but being stage IIIC I can't help but think in the other direction as well.  Maybe I'm feeling more vunerable now with the number of stage III who have left this forum.  Perhaps, it is because I'm worried about my friend, Ann Silbermann (but doctor I hate pink blog) who didn't receive the news she was hoping for regarding liver ablation..

    I'll get out of my mini-funk and realize this stress is just a consequence of wanting tumor markers.  It helps so much just to voice my concerns here, so thanks for indulging me.

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  • diana50
    diana50 Member Posts: 2,134
    edited October 2012

    Hang in there. The markers can go up and down a few points but in normal range probably ok. Sadly, they don't always work for everyone. I think I lucked out and remember my Onc was doing them every 6 months for 10 and half years.



    You are not a cry baby. This is tough stuff being a cancer patient. Try to not get so far ahead and know you can handle what comes your way. Trust the treatment you got.



    I am half way finished with rads. Doing good here. Optimistic for NED.

    Hang in even on the scary days.

    Diana



    I

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  • clariceak
    clariceak Member Posts: 752
    edited October 2012

    Diana - I'm glad you are doing well.  Looking at your dx, were they able to biopsy your met?  Are you still eligible for hormonal treatment?  I am very optimistic for you.  I think staying NED for 10 years means that cancer has a tough time getting a hold in your body.

    Thanks for commenting on this thread.  It means a lot to me.

    When I was indulging in a little self pity , I was actually thinking "what would Diana do?" and that helped pull me up. I can't control the outcome of tumor tests so I just need to set it aside until they retest in January.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited May 2014

    I've asked four oncologists about tumor markers. All said, no, too many false positives, or instances of rising temporarily for no discernable reason. 

    Personally I would like to have them done. If I recur, I want to know asap. I want to play whack-a-mole when the distant mets are few and far between!

    Try to put it out of your mind if you can. Don't suffer future pain, and don't borrow trouble!

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  • Bugs
    Bugs Member Posts: 1,719
    edited October 2012

    I do like tumor markers done, just for my own knowledge.  My onc looks at them within the big picture.  A few points here and there are not a big deal.  Something as simple as your body fighting a virus could cause a change in them.  They look at patterns and other blood levels all in the big picture.  Try not to dwell on this.  Easier said than done, I know.

    {{hugs}}

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  • LittleFlower
    LittleFlower Member Posts: 405
    edited October 2012

    So Sorry for what you're feeling right now.  Don't beat yourself up.. you are NOT a crybaby.  Cancer is scary stuff, to put it mildly.  Just a quick thought though... do you usually correspond with your primary care about these things?? I just wonder if you spoke with your oncologist if you'd get a different feel about this.  I just wonder this because primary care may not deal with this on a daily basis and may not really have a feel for it?? What is the next step??? Maybe it's time to connect with the oncologist??

    I hope you're feeling better,

    BIG HUGS!!!

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited October 2012

    You're not a crybaby sweetie, I'd be the same way.  My new onc does do TM's and as scary as they may be at times I'm actually glad she does.  My check before this last visit my TM's were in normal range, well this last visit my TM's again were in normal range and were much lower than the time before.  I was happy the first time just because they were normal but that means they were elevated compared to this past visit (does that make sense)...so what the heck was going on before...thats right NOTHING!  Easier said than done I know but until you have BC you DON'T!  I hope this made sense, the point I was trying to make is they fluctuate from visit to visit, I hope this helped and that you feel comfort and reassurance soon.

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  • Momine
    Momine Member Posts: 7,859
    edited October 2012

    Jenny, I know exactly what you mean about the TMs. The first time we checked them, 6 months ago, they were normal and, like you, I was thrilled. This time they were also normal, but one was way lower than last time, which made me wonder. In my case, I guess it could be the intro of femara, but I really don't know.

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited October 2012

    Ah, shoot, Clarice, I'm so sorry you're having this scare.

    There is absolutely nothing I can add to the wise words already written, but I wanted you to know I was thinking of you.

    The stupid fear just never goes away, does it. Even when we think we are doing well, bam, all it takes us one thing to bring us crashing down.

    I really think it is totally normal for TM's to be unreliable, but that is easy for me to say and probably not really that helpful because you already know that. Can you talk to your Onc to get her opinion, or maybe move your next blood work up a bit so you are not sitting there worrying for the next 6 months?

    Hope you can relax a bit! ((((hugs))))

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  • camillegal
    camillegal Member Posts: 16,882
    edited October 2012

    Clarice don't have something until u have it. I'm sorry about the sad feelings u have..But u'r certainly not a crybaby.No way. U've been thru alot and there is so much healing both physically and mentally involved. We can just go thru it--no choices alot of times. But from what I understand TM vary all the time, so try to relax as much as possible. Keep everyone poted

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  • clariceak
    clariceak Member Posts: 752
    edited October 2012

    I think part of my mini freak-out was when my primary doc asked, "You aren't have any symptoms, are you? " and I quickly replied no.  But upon further reflection, I realized I hadn't mentioned the right side of my collarbone has been sore for the past week or so and there seems be some swelling in that area.  I guess I need to report that tomorrow. 

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited October 2012

    Clarice,

     You are not a crybaby! We have a right to be scared and worried sick about a recurrence. Remember this is the tough part, the not knowing. You will get through this!! My two oncs will not do tumor markers. Someone told me to ask my primary dr if he can!! Hugs to you!!

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  • Outfield
    Outfield Member Posts: 1,109
    edited October 2012

    Not a crybaby.  I try to "retire" from these boards but I can't, because as someone I know with ovarian cancer said, "The little bastard's always there, hiding in the bushes."  I can't forget about my cancer.  We live with this fear.  We'd be stupid not to.  The productive thing that this fear can do is prompt us to take action.  Sounds like you're doing this.  

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2012

    Outfield - thanks for making me laugh with your friend's saying.  Loved it! How true!

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