Trending CA15-3

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So I need to someone to talk me down out of the tree or those who have had similar experiences to share with me.  I am a member of other cancer boards but have not posted here in a long long time.  I was diagnosed 10/08 ER, PR+ HER2-.  Had neo adj chemo, bilat mast, ooph, radiation, diep recon, Bisphosphonates clinical trial ending last Nov.  I am now 4 years out.  My onc test tumor markers, specifically CA15-3 every three mos.  She deals strictly in breast cancer and genetics and I am BRCA2+.  So over the last yr my tumor markers have slowly climbed. 20, 25, 27, 33 50, 72.  I had PET scan and Bone Scan in March, CT Scan of Abdomen, Chest and Bone Scan in Sept (two months ago) with nothing showing.  I feel like it is just a matter of time before the other shoe drops and that my onc is waiting for that too.  She says it could still be inflammation (arthritis in lower back) and my feet totally kill me a lot which I think is from Femara.  I am just sick of being shit scared every time I get a blood test.  I am very good with putting it out of my mind and living as much as I can but am wondering if this monitoring is good?  Is something going to show up?  She is an excellent physician and very well liked in the community.   Thoughts?

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  • clariceak
    clariceak Member Posts: 752
    edited November 2012

    That's a tough one.  I just had a call saying my tumor markers were rising. Although I'm not officially BRCA+, ovarian and bc run in my family and according to the geneticist I may carry a BRCA type gene that is not yet identified.

    I have decided no matter how stressful the tests are I would rather know sooner than later.  I think diana50 is an example of how catching mets early may help her reach NED and remain there for a long time.  Although she was 10 years out, her onc continued blood tests.  There was a slow steady rise in tms and eventually a scan showed one bone met. It was treated with radiation and she'll be on hormonals and zometa.  Although some doctors say that early dx of mets doesn't change the outcome, I have to disagree.  One small liver met may mean that liver resection is possible, or a few mets mean the the oncs have more options for treatment.

    I know it is tough to go through the tests every few  months but it sounds like you are making the best of it.

  • mattmansmom
    mattmansmom Member Posts: 6
    edited November 2012

    Well they say there are many BRCA genes just not identified as yet...  I hear you it just can be so stressful right...  I don't know your age or anything but I have a five year old boy and everytime I go through this I think about him losing his mom and eeeekkk.  I was stage IIIb with 3 of 22 nodes and one internal mammary node.  Also on Femara.  Thanks for posting.  As usual these sites are always amazing for support.  I was a member of YSC however their boards fell apart over a yr ago and people rarely post.

  • clariceak
    clariceak Member Posts: 752
    edited November 2012

    My kids were only 8 and 11 when I was dxed, so I understand about having young children and cancer.  It sounds like we are almost cancer sisters.  I am stage IIIC with 9 nodes and one mammary, and also on Femera, zometa, plus ooph.

    Judging from your treatment plan, I would say your onc is knowledgeable and proactive.  I think you are in good hands. 

  • mattmansmom
    mattmansmom Member Posts: 6
    edited November 2012

    Well I wish both of us long happy lives! Taking your advice to heart.

  • Moiralf
    Moiralf Member Posts: 1,056
    edited November 2012

    I can tell you how my TMs went so it might help you identify if you need to be concerned yet.

    I know I'm the dreaded stage 4 but I think the markers show the same for everyone. Still remember that everyone is different and this is only how it went for me.

    Back in 2009 mine started rising. I started at 45 and at 400 my onc did a second CT scan and bone scan-nothing show. Three months later, TMs around 900 another round of scans and still nothing. Move forward another three months and TMs now 1400, more scans and there they were, in my right hip. So for me it took that much for the mets to show. Had treatment and still going well.

    This is just my story, the onc did expect something to show earlier but it didn't and he didn't want to change treatment until he know what he was dealing with. Physically I was showing no signs of anything happening.

    Monitoring the TMs(if they are accurate for you) is the right thing to do and until they show definite and measurable progression it is a waiting game.

    It was a hard and difficult wait, there is no denying that but that is just the way it is. I hate waiting for anything in any aspect of my daily life so you can imaging how all this went down but I just had to think "well until they tell me otherwise I'm doing fine today" I was not prepared to waste time worrying about something I had no control over.

    It could have taken over my life for those 9 months and that would have been worse. I won't let this damn disease take anything out of my joy of each day.

    That doesn't take away from the fact it is damn difficult to wait. I hate waiting, just can't do it.

    Keep positive and do whatever you need to do to stay focused on living in the day.Tomorrow will take care of itself.

    Moira

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

    TM's are tricky. My markers were stable every six months for 10 and half years. August they doubled and PET scan showed met to spine. My Onc told me last week they just are not always reliable but in my case they were. She also said not a lot of Oncs do them. I think Iucked out. Not sure if it makes a lot of difference but for me having one met seems easier then a bunch. It was a large met to my t4 vertebra. Who knows. All I know is I got into treatment fast. And that keeps me going. Hang in



    Diana

  • mattmansmom
    mattmansmom Member Posts: 6
    edited November 2012

    Thanks Moira and Diana. Of course nobody wants Stage 4 but we all know that reality lurks from first diagnosis on.... I agree. I think with the focused radiation and changes in treatment are helping to live longer and yes, get it early is my preferred method too. I just hate trying to figure out what age would be ok for me to leave my son who is only five. Of course, a bus can hit me tomorrow too.... Thanks ladies, I really appreciate your input!

  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited November 2012

    Ladies, I am on the opposite end of the spectrum and tonight I am mad, angry, P.O'ed and every other thing I can think of.  For the last three months I have gone to a GYN twice, a clinic once, a urologist once and my oncologist twice.  I have tried to tell every one of them that something is wrong with my bladder.  No one has listened because my tumor markers are normal.  During my last visit to the GYN she finally did an ultrasound which showed a slightly enlarged right ovary.  I made an appointment with a GYN Oncologist who was going to do a total hysterectomy and oopherectomy on Wednesday.  When he got in there he could only remove the ovaries because of breast cancer mets in all of the other parts.  I am angry and overwhelmed that I have trusted three different doctors with my health care and I feel like I have been failed by them all.

    My kids are 26 and 21.  I am still not ready to leave them.  I want to kick in a wall to help release this anger.

    Thank you for listening.

  • mattmansmom
    mattmansmom Member Posts: 6
    edited November 2012

    I am so sorry and that sucks!  I too am BRCA2 and live in FL (Stuart).  Kick whatever you need to.  you should be angry.

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