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Tumor markers elevated, a little worried right now.

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  • MarieK
    MarieK Member Posts: 467
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    Linda I'm glad that you are "trying" to focus on going back to work.  Until you have something else to focus on you cannot and should not dwell on the "what ifs" and cause yourself unnecessary worry and stress.

    I know it's easy for me to say this to you and hard for you to put this into practice. But it is one piece of advice that I really take to heart and have been trying to do myself.

    I think it gets easier the longer you are out from diagnosis?  

    Anyway, as for the blood tests I wasn't very careful for the first few tests and just went whenever and wherever.  When I started having elevated markers I started taking care to make things as consistent as possible for each test.

    I went to the same lab, I went in the afternoon (after lunch - no fasting needed), I made sure that I had lots to drink (no dehydration issue) and I was very careful with my veins (I try to space out my tests).

    I had an allergic reaction to chemo and had to have a PICC line after the first infusion.  However that first infusion did a lot of damage to my arm veins and now I can only have infusions and blood drawn from my right hand.

    So I don't put any stress on that hand/arm leading up to the blood work.  I keep it warm (wear a hot pocket inside my glove in the winter) and if I'm driving I try to keep the hand moving and sometimes take it off the steering wheel to stretch and help with circulation.

    Maybe I'm going a bit too far but since I started doing this I have not had any trouble with blood flow or veins collapsing during the draw.

    If your Dr orders a retest of just the tumour markers at some point try some of my tips and go to the same lab as before so that you can get more consistency in your results.

    Good luck!

    Kathy I am doing well.  Just went through a minor reno here at home but coming to terms with the fact that I just can't do it all myself like I used to.  Life is busy and I am blessed to be living a busy and full life! 

    The Arimidex is making me very achey.  I wake up feeling like a 90 year old elephant (I'm only 52 and not overweight at all).  After my first cup of coffee and some stretches I feel more "normal".  I had some anxiety but that has gotten better (I actually "happied" it away).

    We have a long weekend here in British Columbia Canada - do you have a holiday weekend in the US too?  I'm going to paint my laundry room and enjoy the sun as much as I can.

    Have a good weekend to you all!

    Marie

  • wallycat
    wallycat Member Posts: 1,302
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    Tumor markers  can give false positives and false negatives...so my onco doesn't do them.

    My fraternal twin was found to have a 7cm (yes, CM) pelvic mass.  They were "sure" it was cancer.

    The doctor ordered a ca-125 because, supposedly, they are more accurate in post-meno women.

    Her levels came back 1/2 pt shy of indicating cancer; her doctor cried and hugged her and said he was sorry; her PA was convinced it was cancer. Before surgery, she had to meet with an oncological gyn, at the stand-by....

    Turned out that her mass was attached to the rectal/intestine area and had nothing to do with her girl-parts..and best of all,

    EVERYTHING was b-9.  Her doc apologized for jumping the gun.

    May you have the same....a false scare.

    Editing to add I have not read through all the posts and did not realize this was 5 pages long.  My bad.

    But I will add this, incase anyone else needs the info..I am part of the Rivkin Early detection ovarian cancer study in Seattle.

    One of the gals told me that some women are excluded from the study because their tumor markers (ca-125) is all over the map...one went from under 20 to over 100 and back to 20 and then 100...after a few cycles, people like this are excluded.  So, clearly, these things do exist.

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, Linda!! My tumor markers have been where yours are! After all the tests, my onc says they are probably normal for me! I have blood work again next week, and  I feel good!! I know it is so hard not to worry! Come here and vent!! Yes, I am a retired Kindergarten teacher, and I now baby sit my two granddaughters !! Are you a principal? You will get through this and come out on top!! 

    Hi, Wallycat, so glad your fraternal twin is fine! So sorry, she had to go through this!!!

    Hi, Marie! I love your posts!! So glad that you are doing great!! I am on aromasin, and the joint pain is annoying! I have been taking it for 9 years! My onc wants me to stay on it one more year!! It does keep,the cancer away! Have a good evening everyone!!

  • GrandmaRobi
    GrandmaRobi Member Posts: 11
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    Hello!

    I hate that we all have to go through all of this worry, when it comes to a blood test!! I totally understand not even wanting to know the results or not having the test at all!! I'm praying that as time goes on, this will get easier.   I have had only two tumor marker tests and never had one where both markers were completely normal. Thus, the reason I have had two pet scans, both being clear!! Now I am dealing with a parathyroid issue, something totally new to me. 

    Robin

  • linnyhopp
    linnyhopp Member Posts: 466
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    Wallycat ~ Thanks for your reply.  I have to say that my MO doesn't usually do blood tests, but when I mentioned that I was anxious about passing the 3 year mark, he said he wanted to order them to reassure me.  Well, that sure as heck backfired.  One of the thing that makes me nervous is I would think he would have had me do them again before going right to a PET scan.  In the back of my mind I am thinking he knows more than he is saying.  I guess time will tell.  I am so glad that your sister was found to be cancer free.  Those words are something we would all love to hear every single time we have to have testing. These tests are so alarming, but it sounds like you had to do the same thing as I will by getting a PET scan.  I don't know if anything ever gets easier with this rotten disease.  I hate cancer!

    Marie ~ I am grateful for all of the kind words you shared with me.  Yes, it is hard to be in a place where I don't know what will happen.  I am trying not to "go there" but the anxiety kicks in every once in awhile.  It was so hot and muggy here today I didn't go out at all.  I treated myself to a nap and it was nice to sleep and put the what if's out of my mind for a bit.  I am so sorry you have had problems with your veins.  I am very lucky to have made it through chemo and Herceptin using veins in my arm.  I do have a bit of lymphedema in my right arm and I try to be careful about it.  I take anastrazole and I have lots of aches and pains as well.  My knees, shoulders and fingers seem to be most affected.  I am going to be 62 this month, but those joints feel like they are going to be 90!  I am going to take your advice when doing blood tests from now on.  I had fasted and then drank a lot of water before the last tests.  I don't know if that would have made a difference?  Take care and enjoy your holiday weekend.  Our next one is Labor Day which falls on the first Monday of September.  I can't believe how quickly this year has gone by.  Time flies when you're having fun...but not right now for me.  Thanks again for your input and caring.

    Kindergarten ~ Thanks for getting back to me again.  I am wondering what your numbers look like.  I was 47 in 2012, 32 in 2013, and now 42.8.  I finally (after 4 e-mails) got my MO to tell me why it was so concerning when it had been higher on a previous test and he said that it's because I am farther out from chemo.  Good luck on your next blood work.  I will be thinking only positive thoughts for you.  No, I am not a principal.  I am the office manager at an elementary school and have been there 27 years.  My husband always says the office staff really runs the school...lol!  I am glad that you are spending time with your granddaughters.  I hope your kids know how lucky they are to have someone who loves their kids taking care of them.  Thanks again for your encouragement.  And yes, you may find me here venting again.  I promise to listen to anyone who also needs to do that.  It's really hard for anyone, who hasn't dealt with this crap, understand how it can really upset your entire life.  I will be keeping in touch on this board. 

    Again, I want to thank all of you for "being here" for me.  Take care and have a great weekend.  Hugs...Linda 

     

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Hi, Linda! My highest number was 67.9, then 39.9, then up to 55, then back down in the 40's. They have jumped all around, but my onc said they never jumped by the 100's, so she was not concerned!! I truly believe that meds, certain foods and anxiety can affect the results !!  I go on Wednesday!! Thank you for thinking of me!! Your hubby is right! Our office staff really ran the school!! They were wonderful and took such good care of all of us!!! Thank you for all that you do !!

  • linnyhopp
    linnyhopp Member Posts: 466
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    Hi Kathy ~ Thanks for sharing your marker numbers.  I know my MO said my marker is "slightly elevated" at 42.8 but it makes me wonder if he is seeing things in the other blood tests that are concerning.  I honestly wonder why he isn't waiting to recheck in a few weeks, but I guess I should assume he is just being extra cautious.  I was her+ so maybe that changes things.  I see the rheumatologist on Thursday and will ask her to order a blood test for my SED rate.  It is usually elevated from inflammation in my body and it will be interesting to see if that has risen as well.  I am trying to try and keep occupied until I have the PET scan and I am actually glad to have to go to work tomorrow.  We will be getting stuff ready for the teachers returning next week.  Actually, our Kindergarten team have had their meeting with the incoming parents, so I am sure they will be around since they already have their keys.  In our district they are really on an energy saving campaign, so teachers can't have their keys for the entire month of July, and I am sure they will be back in the very near future to get their rooms ready.  I am sure you don't miss that at all.  If you ever miss it, I will remind you of how crazy it is at a school every single day!  Take care and I will keep in touch.  Hugs...Linda

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Linda, I will be lifting you up,in prayer for your upcoming Pet Scan! Try not to worry! Your onc is just ver thorough, which is good!! I miss teaching, but watching our grandchildren keeps me busy! I am also helping out with Vacation Bible School this week! Yikes, I am tired!  Have a Great Day!!!

  • linnyhopp
    linnyhopp Member Posts: 466
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    Thanks, Kathy.  Your prayers are greatly appreciated and that is the best thing anyone can give to another.  I can't even imagine how busy you are with the grandkids and helping with Vacation Bible School.  Do your grandkids go with you?  It's a blessing to be able to retire and do something else that you love with those you love.  Try and get some rest...maybe you can sleep for me, too!  LOL!  I am going to be thankful I have to work right now.  It truly has been a distraction.  Thanks, again, for your support.  Hugs...Linda

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Good Morning, Linda! No, my grandchildren do not go to VBS yet, hopefully my oldest will go next year when she is three! Thank you for your encouraging words! I see my onc this afternoon! I have had no caffeine for the the last 3 days, and no meds except my aromasin! Hopefully, my tumor markers will be in a good range! 

  • goldie0827
    goldie0827 Member Posts: 6,835
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    My ca's were 60 and 66 in June. My onc wasn't concerned that they were slightly elevated until I reminded him that they were also slightly elevated in my previous blood work in December. He still wasn't concerned but we went ahead and did scans. My results were positive for bone mets, in the hip and spine. I suspect they were there in Dec. when the levels were elevated. I just went off of Arimidex in Nov. 2013. Another friend from the boards was also just diagnosed with bone mets, just shortly after ending her AI.

    My point is this, the only way to know for sure is with scans. Not that it's going to stop the spread of cancer, but you can start treating it earlier. My insurance wouldn't cover for scans for me, back in Dec. But since the beginning of 2014, we got a new insurance plan/company and they covered my scans. And if you can stay on AI's for extended time, do it! I know Arimidex you can not, as it causes bone damage, but there are others that can be taken for extended periods.

    My onc says he hardly ever goes by what the tumor markers are, as they are usually not right. He was very surprised to see my mets, and wasn't expecting that at all.

    Better to be safe than sorry. I hope they always prove to be false positives. Good luck!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Goldie, so sorry you were diagnosed with mets, and thank you for posting! You are so right, get the scans done!! What treatment are you doing now? Hope everything goes well! Thanks again for posting here!!! Hugs to you! Kathy

  • goldie0827
    goldie0827 Member Posts: 6,835
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    Faslodex and Xgeva, injections monthly. With monthly blood work and scans every 3 months.

    After being clean for 6 years, I was just recently in the last 6 months feeling normal. Not thinking of cancer at some point or another every single day. It was nice while it lasted!

  • linnyhopp
    linnyhopp Member Posts: 466
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    Goldie ~ I am so sorry to hear you were diagnosed with mets.  Hearing those words have to be the hardest ever.  I am very scared and right now I feel the same as Robin said in an earlier post...I almost don't want to have the scan.  When I was communicating by e-mail with my MO, he couldn't quite understand what I was asking (although it was plain enough to my husband) and finally said if I wanted to I could skip the scan and have the test redone after a short time.  My husband and my best friend are definitely not on board for that and keep telling me I have to have the scan.  From what you have shared, I guess that would be the thing to do.  As for the anastrazole, when I asked if I would be taking it for 5 years, my MO said at least that long and maybe for 10 years.  I have a mammogram and bone density test on Monday and then the scan on Thursday.  I am definitely NOT looking forward to next week.  It's ironic that most people feel well when they find out they have an unwelcome diagnosis.  Another reason that I hate this sneaky, rotten disease!

    Kathy ~ I will continue to pray that your tests come back on the honor roll!  Keep us posted.

    Hugs to all of you wonderful women!

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    blood work was good! Thank you so much for asking! Linneyhopp, I would get the scan if I were you!! It will ease your mind!

  • linnyhopp
    linnyhopp Member Posts: 466
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    Kathy ~ I am so thrilled for you that you passed your tests with flying colors.  You are officially on the honor roll!  Yes, I am scheduled for the scan this coming Thursday.  Trying to keep myself busy because I am very nervous about the results.  Have a great rest of the weekend. 

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Linny, you will be in my thoughts and prayers! I sure feel your anxiety and worry, but I just know that everything will be good!! From my Pet scan , I found out that I had a small hiatal hernia, causing my acid reflux! So I am now trying to eat better and lose some weight! There are many positive things that come out of getting these dreaded scans!  My onc keeps telling me that no matter what happens, there are many new drugs to treat breast cancer! She feels that it is like a chronic disease, we will all be around for a long time!!  Keep us posted, Hon!!!

  • linnyhopp
    linnyhopp Member Posts: 466
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    Kathy ~ Thanks so much for keeping the prayers and good thoughts going for me.  I am so grateful for your concern.  When I had my last PET scan in 2011, I found out I had gallstones.  I am probably going to feel them someday and am not looking forward to that...lol!  Its' amazing that after having BC, gallbladder problems seem so small.  I really do need to eat right and lose weight as well.  That is a whole other topic though.  I sure hope you doctor is right for all of us going through this stuff.  Unfortunately, a teacher friend of mine just lost his wife to BC, so that just magnifies my fears.  I just keep praying that I can handle whatever may happen in the future.  I know this is a chronic condition, but it is a real chronic pain in the butt!  Take care and thanks again for caring.  Hugs...Linda

  • goldie0827
    goldie0827 Member Posts: 6,835
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    Glad you are having the scan, and glad I was able to get one too. I suspect I may have had mets about a year ago, but my insurance wouldn't cover but a nuclear bone, which was negative. But I remember the tech asking me if I had any trouble with my hip. The scans won't prevent us from getting mets, but at least it might catch it early!

    Good Luck!

  • linnyhopp
    linnyhopp Member Posts: 466
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    Thanks, Goldie.  I have the scan tomorrow and it's not the procedure I dread, it's the possible results that have my stomach in a knot.  I hope your treatment is going well.  It's so exhausting looking behind our backs all the time with this rotten disease.  I so want to cancel the scan tomorrow, but know it's something I have to face.  Thanks, again, for your kindness.  Linda

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear Linda!! Thoughts and prayers coming your way!! 

    Dear Goldie, thank you so much for your input here, and hope your treatment sends that cancer to the curb!

  • teddybear71
    teddybear71 Member Posts: 38
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    I am also going in for a PET scan. I saw my Oncologist Monday and she said my markers were elevated. This took me by surprise because I have finally started living like Cancer was never part of my life even though I am still taking Tamoxifen. I am more nervous now for this scan than I was when I was first diagnosed 2 1/2 years ago. I am trying to hold it all together and remain calm cool and collected on the outside but inside I am a twisted mess and terrified of the results.

  • goldie0827
    goldie0827 Member Posts: 6,835
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    Teddybear, try not to let it get you like that, it's not going to change things. I often have to remind myself of this. You can look at things 1 of 2 ways.

    1. To be stressed and worry about the unknown, letting it drive you absolutely crazy, stressing you out and causing depression.

    2. Be happy for today, especially if you are feeling well. Smile, be positive and try to be happy.

    My onc was actually surprised that I had mets, he said almost always the tumor markers mean nothing, and I was the exception. Wish I could be so lucky with the lottery! Good luck. Try not to worry.

    Kathy, I'm hoping to kick it to the curb! But if not, I will try and live my life as normally as I can, especially since I feel so good. I just wish it would leave my mind! It's there constantly!

    Linda, how did the scan go? Did the tech tell you anything? I used to have an awesome tech, he would show my my scans and explain everything. I know they aren't suppose to, and he no longer is working. I wish I knew how to get ahold of him.

  • linnyhopp
    linnyhopp Member Posts: 466
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    Kathy ~ Thanks for the prayers.  I am, to say the least, on pins and needles about what the results will show.  I am going to try and keep myself busy over the weekend to keep my head from "going there."  I appreciate you taking the time to see how I am doing.  It seems like everyone who is on this site show love and empathy for each other.  It's such a relief to have somewhere to come and share our fears and know that it will be understood by people who won't judge us. 

    TeddyBear ~ I am exactly where you are right now.  Ironically, I will get the results at exactly the same week I did on my original diagnosis.  I work at a school and it's the first day of school on Tuesday.  I got the results on the first day of school 3 years ago while sitting at my desk. It was horrible to get the news that way and I can still remember every horrible minute of it.  I am feeling very superstitious right now and trying to give myself permission to enjoy the weekend.  As Goldie says...try and enjoy every single day, because it's the only choice we have if we don't want to be overcome by our feelings.  And trust me, I am having a real struggle right now, but am trying to stay in the moment all that I can.

    Goldie ~ As always, thanks for sharing your experience.  It really helps.  No, the techs wouldn't say anything.  In fact there was a sign posted that said not to ask the techs any questions as they are not trained to read the scans.  I think we both know that they definitely have a good idea of what's going on with each patient.  I can't imagine that their training wouldn't include what to look for to make sure they have a good scan.  The scan went fine.  It's definitely not as difficult as a an MRI for me.  The hardest part was keeping my hands over my head because I have issues with my arm due to the lymph node removal.  That and trying to stay still while my nose was itching...sheesh...it never fails, does it?  I admire you for living your life normally.  Really, what choice is there?  I hate that this rotten BC can keep hurting us even after we do everything we can to prevent it.  You are a role model for all of us!

    I hope you all have a great weekend.  I think there is a shopping trip for me tomorrow.  I plan to wander aimlessly since that usually helps me to to feel less stressed out.  If any of you have a better idea, let me know!   Hugs to all of you from my most grateful heart.   Linda

  • RaiderGirl
    RaiderGirl Member Posts: 235
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    I have not had a marker test yet but I did go to a big deal Oncologist for a 2nd opinion on the entire treatment plan .

    The 2nd opinion guy is  a professor of onoclogy medicine at a huge university hospital . He is all stats and studies. He completely disagrees with freguent marker tests.So using his words " Setting humanity and emotion aside. Metatsis cancer has no cure but does have treatment that will contribute hugely to the patients quality and quantity of life. The long term results of treatment are not improved if a patient is diagnosed later as opposed to earlier. These markers are hypersensitive and will frequently show a spike for no reason. Once there is an elevation the patient will undergo a scan. Scans in turn are notorious for false positives, showing lesions or spots that are nothing but once seen must be biopsied. If the biopsy is clear then all the pain, expense and stress was for nothing. Imagine doing this multiple times in the next few years..            If the biopsy is positive for cancer than of course treatment begins. But recall that long term results of metatsis treatment is the same whether a person began treatment months into the diagnosis or one month. Now if we add  humanity and emotion back into the equation, its best to marker test less frequently and spare the patient the stress and pain"

    The big question is how frequent is too frequent?

    My onc wants every 3 months for 2 years.

    2nd opinion Md says first marker in 4 months and then in 6 months and then once a year.

    WTH... this is all so difficult.

    I send you a soft hug and all the good that can come your way.

  • teddybear71
    teddybear71 Member Posts: 38
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    Thank you Goldie And Linnyhopp, I am trying not to dwell on all the negative stuff and am trying to just have fun with my family and friends. You all have been a wealth of information, thank you so very much. My thoughts are with you all who have also been dealt this crappy hand.

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Dear teddybear, thoughts and prayers are coming your way!! Try not to worry, but I know that is so hard! Please keep us posted!!! My tumor markers have been all over the place, and after having many scans, they are finally in the normal range, but not sure why!! I did stay away from caffeine for three days before my blood work this time!! 

    Hi, Raidergirl!   I never had my tumor markers checked until I moved to CA! My three previous oncs did not believe in them, and said the same things you stated! But my onc here, still wants them every 4 months and I am almost 10 years out! Thank you for all the wonderful information you shared!!

    Linda, please keep us posted as well!! I hope your first day of school goes very smoothly!!! 

    Dear Goldie, thank you so much for all your support here! You are our role model and mentor! 

    Hugs to you all, and have a great weekend!!

  • goldie0827
    goldie0827 Member Posts: 6,835
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    Raider, it IS, all so difficult. Unfortunately for me, the tumor markers and biopsy proved true. I hope for all of you that is NOT the case and you all have MANY  false positives.

    I broke down yesterday. We have friends visiting, they are a little older than us and retired. And my husband said that he hoped when we got into our early 60's, we could retire and travel. I said that is 6 years for me, I might not be here. Still makes me cry. I hate this damned disease, and all of the lives it affects. And SO MANY young ladies that are getting it. I am not young (56 in a couple weeks), but I am not old by any stretch of the imagination.

    Kathy, I have NEVER (at least to my knowledge) been called a role model and mentor, thank you very much, I feel honored. My best to all of you and Linda and Teddybear, I hope you get your "negative" results SOON.

  • Kindergarten
    Kindergarten Member Posts: 2,883
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    Good Morning! Goldie!! Yes, indeed, you are a role model and mentor for many!! Despite your challenges, you come here and encourage us!! You are going to retire and travel, and be around for many years!!  Hugs to you!!! Kathy

  • linnyhopp
    linnyhopp Member Posts: 466
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    To all of you...thanks for keeping this topic alive.  I am sitting here with a huge not in my stomach knowing that I will be hearing the results very soon.  I am wondering how I am going to even be able to breathe when that call comes in.  It is such a rotten place to be right now.  Goldie ~ My wish for you and anyone else facing this crap is that the research and studies move along quickly and find a way for all of us to be around for a very, very long time.  I will keep in touch, if I don't have a heart attack first!  Hugs to all