Tumor markers elevated, a little worried right now.
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Kathy, thinking of you today. Good luck and hoping you get your results by Friday.
Ngd54, should you get a PET? Why not? Especially if your markers are rising.0 -
Dear Goldie, thank you so much!!! Dear Ngd54, I agree with Goldie, have the pet scan! Let us know how everything goes!!
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Ngd54 - I say "yes - get the scan" - why wouldn't you???
Kathy - sending good thoughts and a hug.
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thanks for the encouragement. I guess I just wonder if I am being through a lot of tests that are unnecessary. It is nice to hear that tumor markers have helped people in the past. I am just waiting for pet scan to be scheduled.
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Kathy - keeping my fingers crossed for low numbers for you!
Ngd54 - I agree with the others and say get the scan. At least to have a baseline should any problems come up later and/or so your dr can have a better picture for now of what is going on in case something is.
Before BC I never had any TM blood work or PET scans. Since BC I've had 4 PET scans and the first 2 confirmed what the TM increasing numbers were "hinting" at - BC in my upper femur. Now my dr uses my clean PET scan - taken 1 year after last round of radiation - as my baseline and compares my future scans to that one.
I know it's hard to put yourself through the worry of more testing and sometimes these tests can be misleading. But I think it's better to have that knowledge & deal with it rather than worry about what it might be.
My mantra throughout this whole process has been "don't worry until you know you have something to worry about".
I actually had to use it on my husband a lot these last few months...
My husband has never had any serious health issues so never had any scans. But last fall, in the hospital emergency, he had a CT to confirm a kidney stone. Yes it was a kidney stone which he passed without any intervention but the pathologist noted that his spleen was enlarged and he had swollen lymph nodes. That CT led the drs to believe he might have Lymphoma or Sarcoidosis. So he was referred to an MO and then a Lymphoma specialist. They poked and prodded and he had a PET scan which looked very damming but in the end (after more tests and a couple of biopsies) they can't find anything wrong with him (he never had any symptoms other than a swollen spleen and swollen lymph nodes which he was totally unaware of).
But he is now on their watch list and will get a repeat PET scan next month. Nothing may ever develop but if it does they will be on top of it.
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Ngd54 ~ I was procrastinating the last time my onc ordered TMs. After reading posts of encouragement from some very wise women on this thread, I knew that it would be in my best interest to go ahead and have the test. It's totally your decision, but wouldn't you rather know than to keep worrying if you continue to have the rib pain? I will keep positive thoughts for you. Let us know what you decide.
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Hi, Friends!! Thank you so much for your thoughts, prayers and concern!! My numbers are good, and I see my onc in 6 months!!! Ngd54, hope everything is good and don't be afraid to get the pet scan!
MarieK! Thoughts and prayers for You and your husband, that you both continue to do well!!!
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Awesome news Kathy! So very happy for you. May they always be low!
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Thank You, Goldie!! How are you feeling
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I feel good physically, in fact great! It's the emotional part that's hard. But thanks for asking.
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- Dear Goldie!! I am so glad that you are feeling great, you are strong and so positive!! You have a great life ahead, I know it!! You are continually in my thoughts and prayers!!
0 - Dear Goldie!! I am so glad that you are feeling great, you are strong and so positive!! You have a great life ahead, I know it!! You are continually in my thoughts and prayers!!
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Kindergarten, I was reading this thread for some reason, back to 2012. I just wanted to tell you that when you were taking 50,000 ml of Viramin D and your numbers went up........that happened to me a few years ago. My Liver Enzymes sky rocketed, and after elimination of my vitamins we found the 11,000 ml of Vitamin D3 was the culprit. When I went down to normal daily intakes of 2, 000 the liver went back to normal. These are some interesting post on the TM. My Dr. Believes in them. They have always been in the normal range but he said to not be surprised if they will be up because of a b-9 cyst in my scar tissue.......we will see. Something else to worry about. Sigh........
Artsee
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I have a question about CA 15-3 tumor markers. I finished chemo on 4/20 of this year (Hooray) and had blood work on 5/8/2015. Before chemo, my CA 15-3 was 8 and after it was 13. Should I be worried that it is rising?
I am trying not to worry and be a huge baby, but I have to admit that I am a bit scared. I see my MO this Friday to discuss ovarian suppression and Aromasin. I just want to be here for a long time and to enjoy life.
Thank you for your insight.
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not at all. Up to 30 is normal and after chemo is normal to a bit of fluctuation due to your liver bombarded by chemo. These markers are metabolized in the liver so after the insult, it may take a bit longer to be metabolized. You are fine..
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Artsee, interesting info about the vitamin D. I was doing a large dose like that, once a week. I hate taking pills, so once a week was a nice alternative.
ML, lovetodance is right, 13 is nothing to be concerned about and may they stay that low!
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Thank you so much for your help. There are just so many things to navigate and I do appreciate advice from others who have been through this before me.
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I got my TM results today. The last time they were 18 and now they are 23.7. I recently went through a biopsy and have Fat Necrosis, with imflamation around it so my Doc said not to be surprised if they went up because of this. Still well under the limit
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Artsee, those numbers are still ok, good for you. I hope your biopsy comes out ok as well, what ever it was for.
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Hi Everyone ~ Glad to hear that so many of you are having nice, low numbers. I see a new MO in July because my old one moved away. It will be interesting to know what her approach is regarding tumor marker tests. Since I have had a higher number I suppose the TM test will continue. I am kind of looking forward to having a woman oncologist for a change.
I hope everyone has a great Memorial Day weekend!
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My dr. Ordered PET scan and insurance denied it. Why do insurance companies rule your health? Wondering if it is the insurance company or if dr. Could be doing things differently. Now dr. Is ordering bone scan and another CT scan. Will those tests really show why TMare rising? Any experience?
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Hi Ngd54, your doctor can ask for a peer review and challenge the denial. You can also write a complaint to your insuance company and arbitrate it. I have had very good results with this approach and have never been denied once a complaint was filed. Good luck. worth a try. all they can say is no.
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I had the same thing happen. They would only cover chest x-ray and nuclear bone. My onc even went up to bat for me, still they denied it. Then in January, Obamacare, we were able to change insurance companies and I was able to get scans. And of course there were mets. Previous insurance that would not cover was Healthnet. My current is Humana. Good luck!
Linny, you too have a good weekend. And everyone else.
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Dr. Had peer review but PET scan still denied. I thought I had good insurance. I will take your advice Bevin and appeal if the bone scan and CT don't show anything. Goldie, my dr. says he is pretty sure I have mets, too. CT scan showed 4 lung nodules about 9 mo. ago. Linny, I am looking forwardto hearing new dr. thoughts on TM. when I went for 2nd opinion, that dr. did not use them.
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My MO just told me last week that tumor markers are unreliable and it is best to conduct tests if necessary. She has conducted more PET, CT and now Bone Scans in the past year than the whole treatment with prior MO.I was concerned because a prior MO I used relied solely on blood work and refused to do tests.
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I've hear some doctors say they are unreliable, but when I was just going through a fat necrosis issue my Onco, said to not be surprised if the TM went up a little because of it. By foley he's was right. They went up from 18 to 23.7...... I guess they are spot on and can and can be somewhat reliable.
❤️Evie
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My onc would never rely on just TM's - I don't know of any that would. TM's are just part of the mamos, ct scans, etc. and in many cases they aren't reliable - mine happen to be but I always have scans at the same time - every three months right now.
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Hi, Artsee, so glad to see you here Again!! Yes, my tumor markers are always affected by the meds I take!! I have had every scan! Yikes always something to worry abou
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208Sandy, you were diagnosed in 2010 and you get scans every 3 months?
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My tumor markers have been all over the place, the highest being 67! My CA-29-29 is always in the low 40's or middle 30's . My Ca-15 and CEA are always low! My onc said she won't worry until they they take a huge leap, since I have had all the scans!
Ndg54! I pray that every thing works out well! Please keep,U.S. Posted!!!
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Hi all, I just read through 3 years of this conversation, and am looking for a little reassurance. You are all a wonderful bunch of women!
This is about my aunt, not me, and she is really not one to follow numbers etc., so I don't have all the details.
She was diagnosed almost 4 years ago, stage 1B (based on size), 0 nodes, triple positive. That's all I know. The surgery removed 100% with clear margins and she was considered "cured" immediately following surgery. However, her oncologist (New York Presbyterian) is aggressive about treatment, so she had a year of monthly chemo followed by six weeks of radiation, Herceptin, and is still on Tamoxifen. He told her that her chances of reoccurrence following this treatment, "I'm not allowed to say zero, I'm saying less than five percent, but only because I'm not allowed to say zero."
Every mammogram, exam, colonoscopy, etc. has been completely clear. The problem is that they are testing all three tumor markers, CA 27-29, CEA, CA 15-3, every time. Yes, we know how unreliable these are, and they aren't supposed to be used at all, let alone in patients with such early stage followed by such aggressive treatment. But somehow she wound up on an automatic schedule for all 3.
I don't know any of the previous numbers, but my impression is that they have always hovered right at the top end of the scale. From each 3 month visit to the next, they have gone up a bit, down a bit, up a bit, down a bit, again right around the top end. An upset on one or anotherat almost every visit in 3 years. At the last 3 month visit, they were all down so they finally moved her to 6 month visits. This was her first 6 month visit, and the numbers went up over the "limits" again.
CA 27-29 was 43.6 (should be under 40), CEA was 4 (should be under 2.5, she's not a smoker), CA 15-3 was 33 (should be under 32). I don't know how much of an increase it was, she didn't get her previous number, but according to the doctor it was only a little.
Because she was "over," her doctor had to put her back on a 3-month schedule, but sees no reason to do anything else. He keeps telling her he is completely not worried. He said they are looking for increases of 50% to 100%, not a very small increase in 7 months. He also said that most healthy people fall in the "normal" range but a certain number always fall outside it.
Also she'd had tendonitis in her shoulder a few weeks before and was taking heavy doses of Naproxen or something similar. Don't know if that means anything.
I keep trying to remind herself that it's really rare for it to reoccur or metastisize in stage 1 cancers, with that much treatment, and that the numbers aren't that high, and that they have gone up and don for the whole time, and that the doctor is so aggressive he certainly would have ordered scans if he were at all concerned. But we're really all upset this time.0
