I know I know... but still worried about CA-125
Hey ladies. My CA-125 had been 117 before surgery then between 6-9 during and after treatment until today. I just noticed that my ca-125 came back with 14. That's double what my last number three months ago. Should I be worried? I know that doctors wil respond to an upward trend but 14 seems high to be considering my normal range. I just finished anti-biotics for a UTI yesterday but that shouldn't have been a factor I don't think.
Trying to stay sane. Have any of you experienced such fluctuations? From googling around the consensus seems to be a few points is normal but 14 seems to be out of range of a few points.
Comments
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I know U R worried but the rise could possibly B from your UTI !
Hello “Bluesmama”
It’s been a long time since we heard from you. Not being a doctor but knowing that I’ve read many of the ladies here talk about a rise in their CA125 marker after they’ve had some type of infection, and I think that’s consistent with much that I’ve read on the web from reputable sources. The articles below has a range of 0 to 35 as normal.
Yes, I know it is disturbing to see any “rise” that has doubled, but I really would be happy to see 14 one more time. My tumor marker is rising 25 to 30 points each month, and I’m now up to over 300. Yet each one of us will carry a different range and yet have the same diagnosis. Some ladies here have had in the high thousands. One lady had one that went to the 18,000 range. So there is no magic number equally applicable to all of us. So let’s hope your rise is because of your UTI which many of us are also experience from time to time.
My number was at one time down to 8 after a 6-regimen treatment of Carboplatin/Paclitaxel (Taxol) but now the doctor is saying since my markers began to rise in 4 months after my last treatment on January 19, 2017 that I’m most likely becoming “immune” aka "platin resistant" to this chemo combo. He suggested DOXIL, but I said, “NO”. I’m not for trying all the “tools in the cancer box” and decreasing "my quality of life after each trial! So for me, I’m going to opt for only one more regimen, and I told him I’ll take my chances with the same old one. And I would like to be tested before and after the 3rd treatment. If I’m not responding, then I will take that as a sign from the Lord that “enough is enough.” After all, I am Stage IV Ovarian Cancer/Peritoneal Carcinomatosis. This stage has its limits as we all know. I’m not willing to sacrifice my quality of life when the drugs suggested do not hold more promise than the most-often prescribed one. These drugs have been “good for me” by that I mean, I’ve been able to have about a year in between treatments, but the sand in the hourglass is running down into one end, and I’m not inclined to start all over with a less effective chemo regimen.
But your anxiety about the CA-125 marker is a normal one. My doctor says he not only judges me by my CA125 number but by how I tell him I’m feeling. And I’m experiencing new gastric problems, but I’m not desperate enough to “try anything” just to stay alive. You didn’t ask about me, but I just thought I’d throw that in while we’re talking.
If we don’t talk again, may you have a blessed Merry Christmas and live to see many new years!
Love Loretta
Below are several helpful references explaining CA125 with which you’re no doubt already familiar, but it often states that a rise in one’s CA125 marker doesn’t always definitely mean “cancer”. In our case, we know we already have it--but we want to have a long-long period of "progression free survival" and anxiety and uncertainty does occur when we see a marked rise in the CA125 level higher than the standard 35!
_______________________________________________
1. http://www.foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf
____________________________________
2. https://www.medicinenet.com/ca_125/article.htmCA 125
- Patient Comments: CA 125 - Testing Experience
- Patient Comments: Ca 125 - Results
- What is CA 125 test? What is a tumor marker?
- How is CA 125 measured?
- What is the normal range for CA 125?
- What does an elevated CA 125 level indicate, and how is the CA 125 test used?
- What conditions other than ovarian cancer can cause increased CA 125 results?
- Is CA 125 testing useful as a cancer screening test?
- How much does the CA 125 test cost? Does insurance cover CA 125 testing?...”
_____________________________________________3. https://emedicine.medscape.com/article/2087557-overview
_______________________________________
4. https://www.mayoclinic.org/tests-procedures/ca-125-test/basics/why-its-done/prc-20009524
_____________________End of references___________
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Thanks for the response.
Thanks for the response. Loretta, you're always so reliable. I just committed to running a half marathon in March for ovarian cancer research too not thinking that my CA-125 would double today. I haven't even told my family yet so as not to alarm them. So I'm back to doubting myself and not trusting my body. The latter is a huge problem for my self-confidence since treatment ended.
I'll take a look at the references you provided. I keep googling and frankly, nothing is setting my mind at ease. Thank you so much Loretta. I do wish you more quality time.
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"Blues"~Good 2 call~Now get ready for that "marathon"!bluesmama said:I sent my oncologist a
I sent my oncologist a message expressing my concerns. She wants me in for a re-test in 2-3 weeks. So I guess I'll find out in a few weeks whether I need to get my CT scan sooner than later.
Hello again -
Based on your name--do you want me to call you "Blues" or just plain "Mama"?
The call to your oncologist should help to relieve your anxiety.
I have a CA125 test once a month. So now that you've done all you can do--try to concentrate on making plans to enjoy the holidays. We have to constantly keep a clear head and not let "fear" run the show. Nope--it ain't easy, but it's the only way we can ever have any peace of mind. So try not to figure out the number the test will show before it happens. If you can do that, I'll start playing the "lottery". If you give me the winning numbers, I'll split the pie with you!
Okay, I know, that's crazy, if you were clairvoyant, you would have already known what the CA125 count is going to be. For now, try to not spend all your time in the "waiting-wondering" room. Time is precious, and if you're like me, you don't have a lot of "free time". My calendar seems to fill all too quickly with appointments with people I would rather not see, doctors that is! If time flies at your house, like it does mine, the weeks seem to be only about 4 days long!
I'm sure a lot of people need you to be a part of their lives.
Love Loretta
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thanks Loretta!
oh blues, mama, bluesmama... doesn't make a difference to me.
i'm trying to move forward. i've told my family and close friends. we will see where this takes us. just when i started making plans, i see this potential set back. i hate this disease.
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Wonder if HE4 could be helpful
Per takingcontrol58's post I wonder if running a HE4 test would provide more information about the cause of the rise in ca125 levels. The article she posted on the uterine cancer board was about the value of HE4 in surveillance of recurrent uterine cancer but I am sure the same diagnostic value is there for ovarian cancer. https://www.ncbi.nlm.nih.gov/pubmed/?term=25655024
While we are on the topic on CA125, I am in the middle of a chemotherapy. Prior to the debulking surgery I did not get a CA125 number since my oncologist did not think it would a good marker for me (I don't understand why they cannot first perform the test first and then decide if it is a good marker for the patient) But we are measuring CA125 during chemo. Prior to the first chemo it was 224, then in the second one 74, I just had my third chemo and it was 42. I was hoping for a much steeper decline. Is this similar to what you guys have experienced during your treatment? I know the CA125 half life during early chemotherapy is a predictor of how well one with OC would respond to chemotherapy and overall survival for OC. https://www.ncbi.nlm.nih.gov/pubmed/15047226 . It also seems the nadir level of CA125 is also a predictor of overall survival. https://ovarianresearch.biomedcentral.com/articles/10.1186/1757-2215-6-31 Is there anything else we know about CA125? Especially for recurrent uterine cancer?
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Hey there. even though i
Hey there. even though i posted in ovarian because that's where my second tumor was, i was actually treated as recurrent endometrial cancer. at the time of my diagnosis in 2014, I was stage 1a, grade 1 endometrioid adenocarcinoma. two years later, i recurred with the same type and grade of tumor on my remaining ovary but they weren't sure whether it was an endometrial cancer recurrence or a new cancer arising from endometriosis. in any case, we threw everything and the kitchen sink at it as they were treating to cure.
they did a ca-125 before i headed into surgery. i was 117. after surgery, they didn't do another ca-125. they also didn't check during radiation but they did right after. i was at 6. then i had one done just before every chemo cycle. i only had 4 treatments of carbo/taxol. it was 6 just before chemo, then 7, 8, 9, and 9 right after chemo. in Sept it was 7 and now December, it's 14.
the way i understood chemo is the impact is cumulative. logically, i would think that would mean you'd see results trend down better, in theory, closer to the end of your treatment rather than earlier. the fact that your numbers are going down is excellent! and then there's a period where your ca-125 will stabilize.
i know they say to pay attention to trends. you're trending down. which is wonderful.
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Here is an interestingSF73 said:Wonder if HE4 could be helpful
Per takingcontrol58's post I wonder if running a HE4 test would provide more information about the cause of the rise in ca125 levels. The article she posted on the uterine cancer board was about the value of HE4 in surveillance of recurrent uterine cancer but I am sure the same diagnostic value is there for ovarian cancer. https://www.ncbi.nlm.nih.gov/pubmed/?term=25655024
While we are on the topic on CA125, I am in the middle of a chemotherapy. Prior to the debulking surgery I did not get a CA125 number since my oncologist did not think it would a good marker for me (I don't understand why they cannot first perform the test first and then decide if it is a good marker for the patient) But we are measuring CA125 during chemo. Prior to the first chemo it was 224, then in the second one 74, I just had my third chemo and it was 42. I was hoping for a much steeper decline. Is this similar to what you guys have experienced during your treatment? I know the CA125 half life during early chemotherapy is a predictor of how well one with OC would respond to chemotherapy and overall survival for OC. https://www.ncbi.nlm.nih.gov/pubmed/15047226 . It also seems the nadir level of CA125 is also a predictor of overall survival. https://ovarianresearch.biomedcentral.com/articles/10.1186/1757-2215-6-31 Is there anything else we know about CA125? Especially for recurrent uterine cancer?
Here is an interesting article talking about HE4 and CA125. It seems one is more sensitive when women are pre or post menopause.
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Hi Bluesmama,bluesmama said:Hey there. even though i
Hey there. even though i posted in ovarian because that's where my second tumor was, i was actually treated as recurrent endometrial cancer. at the time of my diagnosis in 2014, I was stage 1a, grade 1 endometrioid adenocarcinoma. two years later, i recurred with the same type and grade of tumor on my remaining ovary but they weren't sure whether it was an endometrial cancer recurrence or a new cancer arising from endometriosis. in any case, we threw everything and the kitchen sink at it as they were treating to cure.
they did a ca-125 before i headed into surgery. i was 117. after surgery, they didn't do another ca-125. they also didn't check during radiation but they did right after. i was at 6. then i had one done just before every chemo cycle. i only had 4 treatments of carbo/taxol. it was 6 just before chemo, then 7, 8, 9, and 9 right after chemo. in Sept it was 7 and now December, it's 14.
the way i understood chemo is the impact is cumulative. logically, i would think that would mean you'd see results trend down better, in theory, closer to the end of your treatment rather than earlier. the fact that your numbers are going down is excellent! and then there's a period where your ca-125 will stabilize.
i know they say to pay attention to trends. you're trending down. which is wonderful.
I of course remember your medical history. You are one of the first people I contacted with on this board and am so thankful for all the help that you have provided. CA125 at 14 - especially with the presence of an infection does not sound too bad but I can see why you would be concerned. Glad to hear it would be measured again soon. Please insist on HE4 testing also so that there are no false positives/false negatives. Wouldnt it be cool to have a home testing available for these cancer markers? I am sure I will measure it every day.
Thanks for your comments about about my CA125 levels. Hopefully by the end of the treatment I will also reach <10 levels. Keep us posted!
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Thanks for the link,NoTimeForCancer said:Here is an interesting
Here is an interesting article talking about HE4 and CA125. It seems one is more sensitive when women are pre or post menopause.
Thanks for the link, notimeforcancer. It does seem as if combination of these two tests would provide the most complete picture.
0 -
Hi Loretta!LorettaMarshall said:I know U R worried but the rise could possibly B from your UTI !
Hello “Bluesmama”
It’s been a long time since we heard from you. Not being a doctor but knowing that I’ve read many of the ladies here talk about a rise in their CA125 marker after they’ve had some type of infection, and I think that’s consistent with much that I’ve read on the web from reputable sources. The articles below has a range of 0 to 35 as normal.
Yes, I know it is disturbing to see any “rise” that has doubled, but I really would be happy to see 14 one more time. My tumor marker is rising 25 to 30 points each month, and I’m now up to over 300. Yet each one of us will carry a different range and yet have the same diagnosis. Some ladies here have had in the high thousands. One lady had one that went to the 18,000 range. So there is no magic number equally applicable to all of us. So let’s hope your rise is because of your UTI which many of us are also experience from time to time.
My number was at one time down to 8 after a 6-regimen treatment of Carboplatin/Paclitaxel (Taxol) but now the doctor is saying since my markers began to rise in 4 months after my last treatment on January 19, 2017 that I’m most likely becoming “immune” aka "platin resistant" to this chemo combo. He suggested DOXIL, but I said, “NO”. I’m not for trying all the “tools in the cancer box” and decreasing "my quality of life after each trial! So for me, I’m going to opt for only one more regimen, and I told him I’ll take my chances with the same old one. And I would like to be tested before and after the 3rd treatment. If I’m not responding, then I will take that as a sign from the Lord that “enough is enough.” After all, I am Stage IV Ovarian Cancer/Peritoneal Carcinomatosis. This stage has its limits as we all know. I’m not willing to sacrifice my quality of life when the drugs suggested do not hold more promise than the most-often prescribed one. These drugs have been “good for me” by that I mean, I’ve been able to have about a year in between treatments, but the sand in the hourglass is running down into one end, and I’m not inclined to start all over with a less effective chemo regimen.
But your anxiety about the CA-125 marker is a normal one. My doctor says he not only judges me by my CA125 number but by how I tell him I’m feeling. And I’m experiencing new gastric problems, but I’m not desperate enough to “try anything” just to stay alive. You didn’t ask about me, but I just thought I’d throw that in while we’re talking.
If we don’t talk again, may you have a blessed Merry Christmas and live to see many new years!
Love Loretta
Below are several helpful references explaining CA125 with which you’re no doubt already familiar, but it often states that a rise in one’s CA125 marker doesn’t always definitely mean “cancer”. In our case, we know we already have it--but we want to have a long-long period of "progression free survival" and anxiety and uncertainty does occur when we see a marked rise in the CA125 level higher than the standard 35!
_______________________________________________
1. http://www.foundationforwomenscancer.org/wp-content/uploads/CA125levels.pdf
____________________________________
2. https://www.medicinenet.com/ca_125/article.htmCA 125
- Patient Comments: CA 125 - Testing Experience
- Patient Comments: Ca 125 - Results
- What is CA 125 test? What is a tumor marker?
- How is CA 125 measured?
- What is the normal range for CA 125?
- What does an elevated CA 125 level indicate, and how is the CA 125 test used?
- What conditions other than ovarian cancer can cause increased CA 125 results?
- Is CA 125 testing useful as a cancer screening test?
- How much does the CA 125 test cost? Does insurance cover CA 125 testing?...”
_____________________________________________3. https://emedicine.medscape.com/article/2087557-overview
_______________________________________
4. https://www.mayoclinic.org/tests-procedures/ca-125-test/basics/why-its-done/prc-20009524
_____________________End of references___________
I hope you are doing o.k. I had to commemt to you about your attitude: Mine is the same..........I will not extend my life for the sole reason of extending it. I am out of options for chemo also; I was on lymparza for a couple of months earlier in the year, max dose of 16 caps per day. It made me miserable, tired, not wanting to do anything or go anywhere, etc. and caused anemia. It dropped my CA-125 and my oncologist said I was to stay on it indefinitely........I told him NO WAY! It kept me alive but made me feel awful! As I wartch my CA-125 ri
wse, I have to decide if I take the onc. recommendation and go on 1/2 dose. My onc. watches my CA-125 closely, though I know this is not the only thing to watch for.
I agree to also not take anything and everything that comes out as new treatment if it leaves no room for QUALITY OF LIFE. Here's hoping for the best!!!!!
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Hey y'all. Just wanted to
Hey y'all. Just wanted to provide an update. I had a re-test scheduled but had to push it back a week because of a terrible cold. I just got my results yesterday and my CA-125 is back down within my normal range. I'm relieved until the next scan. I try not to panic and most days I put on a good face around scan time but that sudden doubling really had me in for a dark loop. Took me a week to really shake it off and resume with my life.
I just noticed pandagypsy's response. Sorry I missed it! I agree with quality over quantity. Frankly, I think that's how I ended up with this second cancer. I chose quality and left that ovary behind. Was it worth it? I'm not sure of the answer to that. And I'm sure you're evaluating things about your own situation as well. In the end, we do what feels right and I'm sure you'll do the same. Do I regret leaving that ovary behind though? No. It was my choice and I knew what I was getting into.
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Ovarian Preservationbluesmama said:Hey y'all. Just wanted to
Hey y'all. Just wanted to provide an update. I had a re-test scheduled but had to push it back a week because of a terrible cold. I just got my results yesterday and my CA-125 is back down within my normal range. I'm relieved until the next scan. I try not to panic and most days I put on a good face around scan time but that sudden doubling really had me in for a dark loop. Took me a week to really shake it off and resume with my life.
I just noticed pandagypsy's response. Sorry I missed it! I agree with quality over quantity. Frankly, I think that's how I ended up with this second cancer. I chose quality and left that ovary behind. Was it worth it? I'm not sure of the answer to that. And I'm sure you're evaluating things about your own situation as well. In the end, we do what feels right and I'm sure you'll do the same. Do I regret leaving that ovary behind though? No. It was my choice and I knew what I was getting into.
So glad to hear that the CA 125 numbers are back to normal. I think panic is the right reaction to news like this. Please don't be too hard on yourself.
BTW regarding the decision on keeping your ovary.. I think it was the right decision. Take a look at this new paper from June 2017. http://www.gynecologiconcology-online.net/article/S0090-8258(17)30315-3/pdf Check out the results section. What happened to both you and me was sooo very rare. (0.75% chance of micrometatasis) It was definitely worth he risk. We just got unlucky. I just hope that our luck has changed since. I am dealing with a potential remnant ovary syndrome (hopefully it is just granulation tissue) Again a very rare issue. Hope I won't hit the lottery again.
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dsings, that is a greatdsings said:CA-124
My current CA125 number is "4". I am blessed1
dsings, that is a great number! congratulations.
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Going to read that article.SF73 said:Ovarian Preservation
So glad to hear that the CA 125 numbers are back to normal. I think panic is the right reaction to news like this. Please don't be too hard on yourself.
BTW regarding the decision on keeping your ovary.. I think it was the right decision. Take a look at this new paper from June 2017. http://www.gynecologiconcology-online.net/article/S0090-8258(17)30315-3/pdf Check out the results section. What happened to both you and me was sooo very rare. (0.75% chance of micrometatasis) It was definitely worth he risk. We just got unlucky. I just hope that our luck has changed since. I am dealing with a potential remnant ovary syndrome (hopefully it is just granulation tissue) Again a very rare issue. Hope I won't hit the lottery again.
Thanks SF73! Remnant ovary syndrome? Oh geez. I should get my hormone levels checked. That is crazy. I do hope it's just granulation. Here's to hoping you lose that lottery.
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Sad and true.evolo58 said:I'm slipping in to say "hello
I'm slipping in to say "hello" to my cousins here (I'm a Type II endo cancer), but I think that we will ALWAYS be looking nervously at tests from now on, no matter how many years are behind us. I don't think that any of us can EVER take any tests as "routine" again.
Thank you, LorettaMarshall, for the pamphlet on CA-125. The pamphlet points out that many factors can skew a CA-125 test, and one solitary test is not always adequate. Glad to see your test is back to normal, bluesmama, and you can rest easy for just a little while.Hang in there. If anything there's always this community.
0 -
I'm slipping in to say "hello
I'm slipping in to say "hello" to my cousins here (I'm a Type II endo cancer), but I think that we will ALWAYS be looking nervously at tests from now on, no matter how many years are behind us. I don't think that any of us can EVER take any tests as "routine" again.
Thank you, LorettaMarshall, for the pamphlet on CA-125. The pamphlet points out that many factors can skew a CA-125 test, and one solitary test is not always adequate. Glad to see your test is back to normal, bluesmama, and you can rest easy for just a little while.0
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