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Ca 15-3 elevated Dr Not Concerned?

Wife Diagnosed age 36 in 1987, lumpectomy and rad, then a new BC same breast, in 1990, different pathology so they said it was a different, new cancer, not recurrence. Mastectomy, no other treatment necessary, very small early stage.

Since then, disease free for 25 years, and was seeing Onc once a year, after the first five years. BUT, about 6-7 years ago her CA 15-3, peeked above the normal,range for the first time, at 33. So he started having her in every three months. After a year of it bouncing between 32 and 38 and back, he concluded its her new normal, and told her to come in every six months. And that's what she has been doing the last 6-7 years.

6 months ago, ca15-3 was 40 (highest ever at that point was 42). This week she retested and it jumped to 49.

This scares me. But Dr said he is not concerned he thinks this is her new normal and she just tends to run high. His opinion is based on normal physical exam, no symptoms, and all other markers "perfect" (other markers are CEA, CA 125. And he sees no reason to "go on a wild goose chase at this point.

I don't know what to make of this and wonder if she should go for second opinion, (she doesn't want to, just wants to forget about it for 6 months. I'm inclined to let it go and just support whatever she wants to do.

But this scares me.i know that CA 15-3 can move around, and is not considered reliable by some doctors, but still, why would it jump,like that? And if he isn't going to act on it, why take the test in the first place?any thoughts? I'd appreciate any comments I just want to do the right thing for her, she is an ostrich , head in sand.



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Comments

  • dtad
    dtad Member Posts: 771

    Most docs feel that the Ca-15-3 is unreliable. I would not put too much emphasis on it. Especially since she has been NED for 25 years! Not sure why her doc ordered it but I think you will find that most docs at major facilities would not have run it. Good luck and continued good health for your wife. She's lucky to have you....

  • susan_02143
    susan_02143 Member Posts: 2,394

    dtad,

    Well, that is just not completely accurate.

    There are plenty of doctors who use the markers to "see" what is happening inside our bodies and many of them work at the major research hospitals. In fact, doctors at the major research hospitals are the ones who developed this test. The markers are not indicative for some people, but these markers are a blessing for those that can track their disease with this additional tool. I am one of those people. My markers tell me and my medical team what is going on long before anything shows up on a scan; about 6 months before. This marker is why we found my mets so early and were able to treat them so successfully, before they had blossomed all over my body. We knew that a protocol that had worked for 4 years was coming to the end of its lifespan for me because those markers had increased significantly though the scans did not show any new activity.

    What is true is that a one-time change in markers is not indicative of much. We are looking for patterns with a large % increase or decrease. In this case, I might consider asking to return to the 3 month blood work pattern to track it more closely. However Ragman doesn't know if his wife's markers are a good indicator. Markers can go up due to any kind of inflammation-- allergies, low grade infection, etc. The difference between 42 and 49 is really not generally enough to set off alarms. Somewhere around 65 is where I would get concerned.

    All the best to Ragman.

    *susan*

  • ragman
    ragman Member Posts: 19

    Thanks to both of you

    She is not willing to go back in 3 months. I would like her to go for a second opinion, but she wont do that either (ostrich syndrome). This makes it much harder for me. But i have no choice.

    She also was told by the radiologist that everything looked good but he did notice some calcium deposits in her blood vessels on mammogram. So i set an appointment with my PCP/CARDIOLOGIST, for her (shes never had a really comprehensive exam cardio wise). She isnt happy about that either but i am insisting. Unfortunately its three weeks from now. At that time, i might ask his opinion on the CA 15-3 thing, even though he is not expert in that field what would he do if he were us.

    Her mother and my mother, both died decades ago, of breast cancer. This is very hard.

  • yatcomw
    yatcomw Member Posts: 57

    I would do another bloodwork within a few weeks. A 49 is a bit high off the norm. Of course there are many things that can give you a high number that are benign but I definitely wouldn't wait. As already mentioned....tumor markers can give you heads up six months before anything can be seen or felt. I will tell you I am much like your wife and try to keep my head in the sand as much as possible. It is a way to cope with all the scary stuff.

    Jacqueline

  • ragman
    ragman Member Posts: 19

    Thanks Jacqueline.

    What i am having a hard time with is this...

    i know that markers if they work for someone, can give a heads up on recurrence 6 months as you said, even in some cases, 9 months, in advance of clinical symptoms. But her markers have been elevated to one extent or another for more than 5 years with no symptoms. Thats why i am thinking maybe i am overeacting and the Dr is right. Or am i in denial, like she is?

  • susan_02143
    susan_02143 Member Posts: 2,394

    Ragman, her numbers have not been elevated. Her normal numbers are what they are and the "range" means nothing given her consistent numbers. When I was cancer free, I was always between 42 and 48. That was normal for me. Don't use those range numbers since they mean nothing for her.

    This is her body. It sounds like you are really pushing her to be more involved with the medical community than feels right to her. Stop. Listen to her. Denial doesn't describe the fact that she doesn't want endless tests and anxiety due to a few ticks up in a number that might or might not be accurate for her.

    *susan*

  • ragman
    ragman Member Posts: 19

    Susan, thanks for the response.

    2 things

    , up until 5 or 6 years ago, her ca 15-3 was always in the 20's. So are you saying she has a new norma? and how do we know if 49 is part of the new normal?

    So are you saying that its quite possible that she really doesnt have anything to worry about (we dont know for sure, of course)

    Second, regarding your comment about me pushing her, thanks for that, its something i have thought about and considered. Maybe i should just leave it alone. But i would have an easier time doing so, if i felt that she was thinking it through. She is a very smart woman, one of the smartest people i have ever known. So the fact that she acts this way makes me think she has not thought it through, and is just acting out of fear. The other part of this, is that if not for her, and me, i feel like i owe it to my kids to make sure everything is done to be thorough. Feel free to tell me i am wrong.

  • susan_02143
    susan_02143 Member Posts: 2,394

    ragman, it is possible that she has a new normal. I don't know you or your wife so it is hard for me to know what the two of you are thinking. Well, it is easier to know what you are thinking, but your wife's thoughts are a mystery. I am going to be honest. I bet she is thinking this through; she just isn't sharing with you since she doesn't agree with your conclusions. "Owe your children" is a really odd statement. I think you may have overstepped. If I were married to someone who was pushing me this way, I would do the proverbial "smack you upside the head." You say she is a smart woman. Then trust her. Certainly tell her that you wish she would do x, y, or z, but then support what she decides to actually do. This isn't the place to create a barrier. Give her space to describe if she has fear. Laugh. Love. Do something special for and with your family. Celebrate that your wife is doing well. Take the kids to the park. Life is good.

    I think if you get out of the way, you will give your wife room to make the decisions that are good for her.

    *susan*

  • Lolis
    Lolis Member Posts: 294

    ragman, have you tried having a conversation with your wife (heart to heart) explaining why you pushing and how you feel? Perhaps she might open up and you may understand where she I coming from. You say she is a very smart woman then chances are that has thought it through.

    Hope the Ca levels are just her new normal.


  • ragman
    ragman Member Posts: 19

    Susan I laughed at your comment "take your kids to the Park". My kids are in their 30s.

    Why would owing it to my kids be an odd comment? Don't we both owe it to them to do everything possible to stay healthy, be around for weddings, grandkids?

    As far as what she is thinking, it's Beyond my understanding. This is something I've been dealing with for 30 years, ever since she was diagnosed the first time., She's been afraid to go to and doing everything she can to avoid seeing doctors.

    Yesterday, I told her I made an appointment for her on May 9, to see my primary care physician. If I had waited until May 8 so she didn't have to think about, it she wouldn't have even gone to the appointment . I know her well enough to know that. This morning , as I was leaving the house, in a miserable voice she said "I'm going to be unhappy now forever, knowing that I have to go to doctors I'll never have fun again and never enjoy myself and the rest of this year will be miserable."

    This is a 65-year-old woman who's never even had a stress test. She hasn't had a comprehensive check up in our adult life, again something I have been dealing with for 30 years. I've given her a ton of space , I've argued with her, I've hoped that she would wake up and realize that this is not going to end well,l, and then I've given up and figured she's got to be responsible for her own health or not I can't aggravate myself in her anymore. But nothing works. So now at the very least we know she has plaque in the blood vessels of her breast (shown on the mammogram) which means she probably has plenty of plaque elsewhere. What do I do just let it go and wait until she has a heart attack ? I just can't do that , that's why I made the appointment with the primary care physician is also a cardiologist.

    By by the way unbelievably, she smokes she doesn't exercise she's a sugar addict and I have not been able to get her to change any of her habitsl

    I really appreciate your comments I'm not trying to be argumentative but you can see that I'm not really dealing with a rational situation I think. Sorry to be so long winded.

    As far as follow up with you oncologist on the Markers is concerned, I've decided I may ask the primary care physician for his opinion when she goes for a physical, but I'm thinking probably rather than wait six months or make her go in three months I'll wait till the end of August which would be four months, and right after our vacation. So she can least hopefully enjoy the summer . (won't tell her about that appointment until after vacation.) At least that's what I'm thinking now.



  • ragman
    ragman Member Posts: 19

    Lolis, thanks for

  • dtad
    dtad Member Posts: 771

    susan..let me clarify by saying most docs will not use the cancer marker to detect recurrence in early stage bc. Its just not done anymore at most facilities. Yes they were developed by docs at these facilities but they have been proven to be unreliable. Believe me I wish they were more reliable because as it stands now there is no way of screening stage one progressing. Its really scary!

  • muska
    muska Member Posts: 224

    Hi ragman, my mother is going to be 93 in two weeks. She has never had a stress test and last time she was in the hospital, happened when I was born almost 58 years ago. Of course she has plenty of plaque and atherosclerosis. And btw she still puts three or four spoons of sugar into her tea or coffee. No diabetes. What I am trying to say with this? There are things we cannot control and breast cancer is one of them.

    Speaking of your wife she certainly had more than just yearly checkups if she has had breast cancer and continues having them if her blood is checked so frequently. Physicals have proven to be mostly useless as well as yearly OBGYN exams (my PCP recently told me if there are no symptoms and serious underlying problems, OBGYN exam is only done once every three years in our age group.)

    I recently asked my MO about CTC (circulating tumor cells) test and whether it makes sense to do it. She said they don't do it because they don't know how to interpret and what to do about the results. Sometimes pushing more testing doesn't help.

    All the best to you and your wife.

  • KBeee
    KBeee Member Posts: 695

    Most docs do not use those blood tests, except in stage IV. A few use them, but they have the reputation of leading to wild goose chases. They will be elevated for lots of reasons, including inflammation. She should be alert for any symptoms though, and if she develops any worrisome symptoms, those should be evaluated ASAP.

  • ragman
    ragman Member Posts: 19

    this is what her Dr mentioned, he specifically used the term "wild goose chase" saying he didn't want to send us on a wild goose chase with scans. I guess he really thinks it's just the way she runs and not recurrence related. Wish my wife andI could get comfortable with that idea.

  • ragman
    ragman Member Posts: 19

    So i just looked back at the list of past appointments. It only goes back as far as 2009. And in 2009 she was doing 4 month appointments. So this means that markers in the 32-40 range go back to at least 2008.

    So 8 years at least, with CA 15-3 above the reference range, with no symptoms, and other markers remaining normal. Makes me think that for whatever reason her normal range is rising, but 8 years with no symptoms indicates its not due to recurrent BC. I actually remember noticing even before that, that her CA-15-3 even when it was in the normal range, was slowly rising from high teens to high 20's for 4-5 years.

    So is my logic flawed, in thinking its highly likely not cancer related, even with this last jump from 40 to 49?

    Sorry, I know i am obsessing, just difficult, as you all know.

  • muska
    muska Member Posts: 224

    I think your logic is correct - as long as all the other markers are within normal range.

  • Geeg
    Geeg Member Posts: 1

    Hi Ragman,

    I was unaware of this forum and happened to do a google search of "should Ibrance be used when CA15-3 is elevated" and your posts came up. My CA15-3 is now at 2,005. I pay a lot of attention to that marker, because obviously my metastatic disease is out of control. In hindsight, I'm highly suspicious of so-called "new normals". Is a slow climb really a "new normal" or just a slow climb? I don't panic about those things but I sure think it's smart to pay attention and not discount information.

    You are a great advocate for your wife. How is she doing? I hope that she's doing well and everything is maintaining at her "new normal".

    Geeg

  • minustwo
    minustwo Member Posts: 13,000

    Geeg - this thread has been inactive for a year so you probably will not get an answer.

    Most docs believe that cancer antigens are only good for trends. But they are used more with Stage IV. My MO said that the CA15-3 has been surpassed by the CA 27-29 - a newer version - but he's hesitant to read much into that either.

    It looks like you are Stage IV? If so, you may want to fill in "My Proifile" with your diagnosis & treatment so far and post any question on the Stage IV threads.

  • ragman
    ragman Member Posts: 19

    geez, so,to update you...

    Ironically, wife was diagnosed with ovarian cancer in September. At time of diagnosis, her ca 15-3 was 76. Her ca 125 (Ovarian ca marker) was 1700!!!.

    She had chemo, surgery and more chemo, and her ca 125 went down to 4. Her ca 15-3came back down to 50, (in April, while she was in chemo. So it was back down to where it was a year ago. I subsequently read a study that showed 78% of women diagnosed with ovarian cancer had elevated ca 15-3 (small sample size). So I feel her breast oncologist should have picked up on it. So she isn't going back to him. She hasn't seen a breast onc since 6 months before diagnosis of OC, which is a year and a half ago. Gyn/onc said not to worry bout it while she's being treated for OC.


    So now, she had scans 5 weeks after chemo ended, and all is clean, next appointment is in August. So we just pray. And we have to find another breast oncologist just to keep an eye


  • ragman
    ragman Member Posts: 19

    even though this thread is a year old, I get emails when someone puts up a post, so I was alerted to come back and respond.


    Geez, I hope you find a solution to get your cancer back under control.



  • minustwo
    minustwo Member Posts: 13,000

    Good-O RagMan.

  • jo6359
    jo6359 Member Posts: 2,009

    Diagnosed with early stage breast cancer in Dec.I had BMX and SNB on Jan.29, 2017. I have single IDC 2.5 cm × 1.2 cm in pectoralis muscle with 1/18 lymph nodes positive. Grade 2 Hormone Negative Her2+. I received a CA 15.3 test. The result is a 10. Will this be my marker for my chemotherapy? So if it rises above 10 does that mean the treatment isn't working?

  • jo6359
    jo6359 Member Posts: 2,009

    Diagnosed with early stage breast cancer in Dec.I had BMX and SNB on Jan.29, 2017. I have single IDC 2.5 cm × 1.2 cm in pectoralis muscle with 1/18 lymph nodes positive. Grade 2 Hormone Negative Her2+. I received a CA 15.3 test. The result is a 10. Will this be my marker for my chemotherapy? So if it rises above 10 does that mean the treatment isn't working?

  • KBeee
    KBeee Member Posts: 695

    Doctors typically do not make chemo decisions based on those numbers. They are used to identify trends. Inflammation can cause them to rise

  • KBeee
    KBeee Member Posts: 695

    I don’t think they’ll use that to determine whether chemo is working. It is usually used in metastatic cancer.

    Numbers can vary during chemo. You can check with MO about how he/she plans to use it

  • jo6359
    jo6359 Member Posts: 2,009

    im supposed to start chemo in 4 days. What is the purpose of the Ca 15-3? Does my number 10 have no relevance. I guess what I'm trying to say what is the purpose of this test? Cancer is so confusing

  • KBeee
    KBeee Member Posts: 695

    A few oncologists monitor this from time to time, looking for upward trends. Most do not do this test.

  • imagine
    imagine Member Posts: 96

    What kind of inflammation would cause the CA 15-3 to go up. Mine is slightly elevated, 32. I cannot find anything that states that would cause an elevation?

    Worried!!!

  • jo6359
    jo6359 Member Posts: 2,009

    Barteelis-my oncologist uses the CA 15-3 only in conjunction with other labs and screenings. He believes the test is not a reliable assessment tool when used alone. I have read similar postings on these threads. Don't panic.