Tumor markers elevated, a little worried right now.
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MarieK...all I can say is 'CANCER SUCKS'!!!! This is the way the rest of my life will go.Looking over my shoulder.
Sometimes family life sucks as well, and I'm the first to agree with you that, when the kids are not happy...mom is not happy!!
I pray that all gets better for you, for me, and for all the sisters out there that are trying to figure it all out !
Artsee
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My experience with tumor markers was that they doubled. Had been in normal range for 10 and half years. PET found one spinal met on t4. Finishing up 25 rads to vertebra. (t3t4t5) Monday. On femara and monthly zometa for 2 years. Very Optimistic. For me the TM worked and found the met. It doesn't always work that way. Keep up with doc appts. I think very important. Hang in
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Dear MarieK, so good to hear from you, and thanks so much for your update!! So glad to hear lesions were benign. It sure sounds like your onc is on top of things and wants to keep a close eye on things!!! My onc said the same thing about how some women's tumor markers bounce around. Mine did the same thing!!! Prayers are coming for your family issues as well!!! Take care cane be kind to yourself every day!!!!
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So here's an update for anyone who is still checking this thread...
I've been going for monthly blood tests and although my TM CA 15-3 went down to 61 they went back up to 86 and now surprise surprise they are in the normal range again!
We are scratching our heads over this one.
The doctor ordered a PET scan after my tumour marker went up to 86 - the highest it's even been tested at - and because of a job action strike at the lab I go to and everyone coming down with the flu in my house - I didn't get my blood drawn until after the PET scan.
The PET scan just showed the hip/femur lesions and nothing else which is good news I guess.
Now why the normal Tumour Marker result?? I don't know but the lab I go to changed the tumour marker test (as of Jan 7) and now I'm at 18 again but the threshold is now 23 instead of 45 (or 48 I can't remember which it was before).
The ONC is now sending me for a hip MRI to check out these lesions further and also for a baseline for future scans/tests.
He still wants me to go for monthly blood tests and he said we'll see what the next TM shows.
I go for the hip MRI before the end of February, have a repeat of my blood work on Feb 25, and see my ONC again on March 12.
Anyone else having up and down tumour marker results?
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Dear MarieK, I always check this thread and I have been thinking about you so much. Thank you so much for posting. You have been on a roller coaster with these tumor marker tests. Yes, the fact they are coming down, is such a good sign. So many things can affect the results, infection, stress, caffeine, medications, etc. My tumor markers have been somewhat erratic as well. I finally had a bone scan and everything was normal. Many oncs don't even test for tumor markers, because the tests can be so unreliable. My onc finally said let's not test them again for 6 months, unless I have pain or other symtoms. Do you have pain or any other symptoms that would suggest mets? Please keep us posted and know that you are in my thoughts and prayers. Hugs!!! Kathy
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Kathy thanks for still checking this thread.
And thanks to everyone else who is on here to support and offer advice.
My tumour markers continue to be well below the normal range and I was being tested monthly. After my last visit with the ONC he told me to stop going monthly and we'll revisit when I see him again in a few weeks.
I had the MRI since my last post and it didn't show anything abnormal.
My ONC ordered another PET scan but because of bad timing I didn't get it done until yesterday and I had my follow up with him on Monday.
He basically told me that my CA 15-3 is normal and if it were not for the suspicious lesions on the bone scan and the first PET he would let it go and see my in 6 months.
So he said to go ahead with the PET scan and I see him on May 9 to go over the results.
We'll see what happens then....
Hugs to all!
Marie
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Dear MarieK, thank you so much for your update!!! I will lift you up in prayer for healing and good results with the Pet Scan. Please keep us posted!! Blessings, Kathy
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Hello all, I too have been wondering about this. I have only been doing CA 27-29 for a year now and none during the time before therapy (wish I had had that done). My lab rates <38 as being normal. My first was 26.6 and the second last week was 25.8. Since I have no other problems and a bone scan last fall and mammo this spring showed nothing, shouldn't they be lower? Does anyone else without mets get these, and what are your numbers? I read one other post that she stated her results were hovering around 8. I know my onc is watching for a spike and maybe these values are my norm. I know markers are notoriously not reliable, but wondered what experiences others have had. Any one out there with sort of high normal markers that has not reccurred? Thanks.
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Hi Moni, mine have always been on the high end of normal. My oncologist just started doing the CA 27-29 and mine for the last two times was 34.1. She always did the CA 15-3 before and just recently started doing this one. The first time she did a comparison and the CA 15-3 was 25.1 and the CA 27-29 was 32.9, so I know that this one runs higher for me. Then the next time (no comparison done) the CA 27-29 was 34.1. It remained the same this time. I really struggle with these tumor markers, mine are so close to the high end that I have no wiggle room! She explained it by saying other things (benign reasons) factor into the number and that each persons number is individual to them, that a lower number for one person is the same as a higher number for me. She said we don't even have to run them... I'm afraid to have them done and I'm afraid to not have them done!
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Hi Moni, mine have always been on the high end of normal. My oncologist just started doing the CA 27-29 and mine for the last two times was 34.1. She always did the CA 15-3 before and just recently started doing this one. The first time she did a comparison and the CA 15-3 was 25.1 and the CA 27-29 was 32.9, so I know that this one runs higher for me. Then the next time (no comparison done) the CA 27-29 was 34.1. It remained the same this time. I really struggle with these tumor markers, mine are so close to the high end that I have no wiggle room! She explained it by saying other things (benign reasons) factor into the number and that each persons number is individual to them, that a lower number for one person is the same as a higher number for me. She said we don't even have to run them... I'm afraid to have them done and I'm afraid to not have them done!
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Hi, Moni!! Last year my CA-27-29 was at 67! I was worried, but my bone scan was completely normal, and they have come down considerably!! I had been on antibiotics and my onc said that so many things can cause an elevation, namely medications! I am getting them tested again in June, but I feel great!! My other 2 oncs in Pittsburgh and Chicago never used these these tests, both said they are unreliable!!! My new onc here in CA, just wanted a baseline!! I am sure that you are just fine, but it is always good to be vigilant!!! Blessings to you!! Kathy
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Thanks for responding Jacksnana and Kindergarten! I am not really worried about it, just wondered what others have found, and I'm with you Jacksnana, sort of conflicted about knowing. It is kind of nice to know if they are true. I wish i had known prior to treatment for a base line number. Due to many complications, I was unable to complete treatment and my MO said she will have to monitor closely, yea......so much for putting this behind me! Haha.....Oh well. Moni
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My Onco said 44 is still in the normal range. Mine are around 22. When he was out with surgery, another Dr. From Milwaukee stepped in for him and he said he didn't do tumor marker tests because they tell absolutely nothing. So everyone has different thoughts on them. I tend to think they are unreliable, but my Dr. Seems to think they important. Oh well......
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Artsee, my specialists here in Australia do not do them either. They said they are unreliable, and only cause more worry and concern then benefit, and cause patients to freak out about a false positive, when most of the time there it is nothing at all to worry about. I have never had the test done in 6 years of this disease.
Ched
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Hi Everyone!
I am new on this site, have enjoyed reading all the encouraging posts. I had TM done last week, CA 27-29 was slightly elevated to 45, so my onc wants a pet scan, of course I'm freaking out! In addition my blood calcium was elevated, so he did a test on my PTH hormone and it is high, so it looks like I could have parathyroid issues. I finished chemo 12/26/2013 and Radiation 3/12/2014, and I am on femara for 5 years. I have been feeling so good until this stupid bloodwork, even started running again, and now I've had the wind knocked out of my sails. I'm a worrier so I really don't like these tests!! I am stage 3A with Ductal/lobular and two nodes with micro metastasis. Thanks for listening!
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Dear Grandma! I have not posted here for awhile, but I keep this thread as one of my favorite topics! I am so glad that I came across your post tonight! My oncologists in Pittsburgh and Chicago never tested tumor markers! Since moving to California, my new onc does tumor marker testing! My highest was 67 and my lowest was 39, the have definitely jumped around! I have had a bone and pet scan, and everything was fine! My onc told me they look for trends!! If you went from 45 to 200! Many oncs don't even test tumor markers, because they feel they can be unreliable!! Caffeine, and medications can affect the results! Try not to worry, and please keep us posted!! If you feel good, I am sure you are just fine!!
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Thank you for your reply! I feel good, of course now since I found that out I feel every little ache and pain, lol!! I am taking femara, just started April 1, have some pains here and there, hopefully that's the reason. I am having a hard time adjusting to this new normal after treatment, trying to keep my worries in check. I long for the days before this ugly diagnosis.
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yes, Grandma!! I so understand!! The first after diagnosis is always the hardest! You tend to worry and be anxious frequently!! It will get better I promise!!!
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Thank you Kindergarten for your encouragement
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Kindergarten,
Thought I would let you know my pet scan was clear, just found a small kidney stone. I still have to deal with my parathyroid issue but so relieved my scan was clear. Thanks for the encouragement!
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Great news GrandmaRobi! What a relief. Enjoy your piece of mind.
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wonderful news!! I am so happy for you, Grandma!!!
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thank you!!
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GrandmaRobi I'm glad your scan was clear. I know that TM worry only too well.
I'm torn between not wanting the tumour marker testing stress/worry and being relieved that I'm followed so closely.
I have an ONC appt today - had a PET 2 weeks ago and blood work last week - but I did not check my blood work results online until this morning. I'm so sick of checking right after the test only to worry and stress until the appt if the markers have gone up.
There is nothing I can do about it so I'm using all of my self control to wait until the morning of my appt now to check it. It's so hard but I'm doing it for myself and to enjoy the time I have until each appt!
Mine is still low at 14 (last time Feb? it was 15) so I'm very relieved! I hope that the PET scan results are good for me too!
I have a friend whose TMs are always out of range but her ONC says that must be normal for her. As Kindergarten says - they are looking for trends.
Kindergarten - you are so kind to check this thread and offer support to us worry warts! Thanks!
Marie
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Hi Everyone...This is my first time on this topic and I have read through all of your posts. My Onc hasn't done on these tests during the 3 years since I was diagnosed. However, he told me to let him know if I was feeling "anything" was not right. I had my regular 6 month visit with him last week and mentioned that I was feeling out of sorts emotionally. He said he was going to order blood tests. I know this sounds crazy, but I have a superstition about July (when the nightmare started with a mammogram) and August (when I was given my diagnosis), but I went and had the tests like a good little patient. Well...I got a call from my Onc today and he said that my tumor markers are slightly elevated and I need to have a PET scan. I can't tell you the numbers because my brain went into panic as soon as he told me. I am freaking out and very scared and nervous. I have read what all of you have written and I am trying to fight back the panic, but it's difficult. I have had an autoimmune disease in the past and have lots of joint pain again. I am hoping this may be the cause of the rise in the markers, but am ent terrified it isn't and that the cancer is back. I just had to have someplace to vent where people would understand how I am feeling. Thank you for being here and for any hope you can give me. I appreciate all of you! Linda
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Linda I know how you feel. You need to try to relax and "think happy thoughts". I know it's hard and I have had to force myself "not to worry until I know what I need to worry about". Take a deep breath and wait until you have some results to focus on...
Maybe your dr is ordering the PET scan test "just in case". It doesn't hurt to have a baseline test and hopefully it will be clear for you.
I would ask him for a copy of the tests and start tracking it myself. I do this and it is good for me to take control over something!
Not obsessing here just keeping informed...
I have a friend like you who didn't have any blood work done during her treatment or after. It wasn't until she was finished Tamoxifen (after 5 years) that her dr shared with her that her markers were elevated. She at first panicked then he told her that they have been for a while and that must be her "normal" level.
I understand that they look for a trend of increases - not a consistent number high or low.
My markers steadily increased over a period of 6 months, then I went for scans (xrays, bone scans, MRI, PET x 2, then a CT guided biopsy). Funny thing is that the markers went down just before I had my first PET then they increased again and continued to do so until I finally had treatment (radiation for bone Mets). No one could explain why - maybe the test was done wrong at the lab?
Anyway, I have heard and I believe that the tumor marker blood tests can be affected by a variety of things - stress, caffeine, gum, dehydration, inflammation etc...
Now I always go for my tumor marker blood work in the afternoon - after I've eaten and had lots to drink. I try not to have more than 1 cup of coffee in the morning and I don't chew gum or drink alcohol the days leading up to my test.
I still worry about the test results because of the Arimidex I'm on which makes me feel very achey through the hips, back, shoulders, hands and feet. If I let myself I can imagine all kinds of nasty things going on inside me.
I try very hard not to go there....I wish you could too.
Hugs to you!
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Marie...You have no idea how much I appreciate your reply. I am sick with worry, but I ,know it doesn't do anything but make me feel worse. I am going to do my best to try and calm down. I am the office manager in an elementary school and have to go back to work on Friday (stupid I know, but office staff work 11 months a year and this year it starts on a Friday) and it will be good for me to have something else to think about. I have been trying to do some research on the reliability of the tumor marker tests for BC survivors, but can't say that I have found much information that makes me feel better.
I have requested copies of tests and procedures, but for some reason, forgot about all of the blood tests that don't show up on-line from my providers. I will be asking for copies of what I don't have so that I can start tracking things myself. I think it's a great idea and not being obsessive at all. I know that I have not had "regular" tumor marker tests after I finished chemo, Herceptin and radiation because my doctor told me that he didn't do that on a regular basis. That being said, I am not sure where I started but apparently he is looking at previous data because he said the number had gone up and he wanted me to have a PET scan to make sure nothing was going on. I did have a PET scan during the process of being diagnosed, but no other testing since that time. I am going to take your advice on being careful of what I eat/drink before any future tests. I was fasting for the tests (more routine ones were ordered), so I guess that wouldn't have affected the results.
As for the Arimidex, I take the generic (anastrozole). Do you have the pain in your joints all the time? I am asking because I have definitely noticed a difference in the past 3 weeks. My knees and shoulders hurt when I stand up and my finger joints are achy all the time, and even more so when I wake up. As I said before, I was diagnosed with an auto-immune disease about 5-6 years ago and the main symptom was joint pain. I always have a high SED rate which means there is inflammation in my body and the results have never been "normal" since I was diagnosed. I e-mailed my MO to see if he wanted me to have that test as well, and I am hoping to hear from him tomorrow. I see the rheumatologist next Thursday, but whenever I tell her I have pain she ALWAYS tells me that it's a chance that the cancer is back. I understand that, is a possibility, but it makes me wonder if she is even making the effort to see what else might be going on with my immune system.
Sorry to go on and on, but your kind words seemed to unleash a lot of my concerns and I so appreciate you for being there to "listen." I will try not to "go there" and will post whatever I find out. Take care and know you are a blessing for me right now. Hugs...Linda
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Dear Marie!! So good to see you here!! How are you doing? You are so positive and encouraging!!! Hugs to you!!
Hi, Liinda! I am so sorry that you are going through this! I certainly understand!! Marie's response to your post was perfect! Please try not to worry, and let us know the results of your pet scan!! Hugs to you!!!
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Hi Kindergarten! Thanks for your encouragement. I really need it right now. I did get a reply from my MO from both of my e-mails to him. He said that the results for the CA27.29 test was 47 in November 2012, 32 in June 2013 and now it is 42.8. I did send him another message to ask him if the jump from the normal result to the 42.8 was more concerning since it was previously a normal reading, but haven't heard back yet. The only thing I remember him telling me on the phone is that any number over the normal one makes him obligated to chase down the reason it has risen. He doesn't do the tests as a rule, and I am kind of wishing he didn't this time. I know that's ridiculous of me, but I am sure anyone who has dealt with this rotten disease will understand. I still haven't gotten the call to schedule a PET scan, but am sure I will soon. I am a bit surprised that he didn't want to do the test again to see if it is, indeed, an accurate reading. On the other hand, I am trying to keep myself from going to the "he must really think I have disease progression" thought. I am trying to fight that thought and just think of how annoyed I am to be going back to work tomorrow.
By the way, are you a Kindergarten teacher? If so, are you off for the summer or are you retired? Our teachers don't return for 2 weeks, so it will be very quiet until they show up for their keys and start working in their rooms. I will be back to post what I find out. Thanks for the kind words and a big hug back to you!
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Hi Again, Marie...I meant to ask you if your results have been "off" if you haven't eaten before having the blood test? I was doing a fasting test for other issues they needed to check and I am wondering if that could have affected the results. I did drink quite a bit of water that morning because I have dry mouth from the drug I take for chemo induced neuropathy. Hope you don't mind my asking. Linda
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