CA-125 levels

beccabtown

This is something I've wanted to ask about for a while, but was too superstitious to put my concerns out there until I had results from a CT scan and heard from both of my oncologists that I should not be worried. My CA-125 levels have been quite high since before my hysterectomy. I'm still too superstitious to put the numbers here, but it's never been below 500, and has never been over 1000. It went down by about 200 points after my surgery, but then went back up a bit with the tests taken before my 2nd and 3rd rounds of chemo.

Both of my oncologists have told me, as most people here know, that it's an unreliable measure for endometrial cancer because various things can affect the level for any individual at any given time. (In fact, my gyn onc doesn't do the test at all until after the full course of chemo is completed; it was my medical onc who ordered the tests with each blood draw before chemo.) They've both also told me that they don't consider my numbers to be outrageously high (they've seen much higher), and that in any case, they go by what the scans say rather than the blood test results, and my scans show that everything is stable, with no metastases.

Still, I can't help but worry. Why order the test at all if you truly think it is meaningless? It also bothers me that neither doctor brought the test results up with me. I only found that they had even been testing for it after I got access to my medical records via my health system's website. (The test result printouts I was given on chemo days did not include the CA-125 results.) It's hard not to worry that they were hiding something.

Oncologists are aware of patients' anxiety about this test and even refer to it as a disorder. (That bothers me quite a bit. If it's a totally useless measure, why administer the test at all?) There is an interesting research article on the subject here https://www.ncbi.nlm.nih.gov/pubmed/22119973 .

Anyway, I am interested in hearing from others who have had similarly high levels before, during, or after chemotherapy. What have your doctors told you about how to interpret/use/live with the results? Thanks very much.

rcdeman

When I asked my mom's gyn/onc

When I asked my mom's gyn/onc and med/onc about CA-125 testing, they just brushed it off. My mom has never had her CA-125 tested because they think it isn't necessary. I know that that CA-125 may be a good marker for some people but not all. Even so, I think I would feel more comfortable if they tested her nonetheless just to create a baseline. They did mention that this marker is only useful for about 50% of women who are diagnosed with a gynecological cancer.

I'm afraid I don't know much more about CA-125 levels to give you any additional information or advice, sorry.

Love,
Rebecca

EZLiving66

Mine was like 8 and I had

Mine was like 8 and I had full blown endometrial cancer so my oncologist said it's not a marker for me and hasn't done it for over nine months.

Love,

Eldri

TeddyandBears_Mom

Mine was around 22 before

Mine was around 22 before surgery - still considered in the normal range.... Then, jumped to 90 something during chemo. Go figure.  My medical oncologist was a bit concerned but my GYN ONC wasn't at all. My last one was 9.  My medical oncologist still does the test every 3 months along with other blood work.  He also wants to do CT scans every 3 months for the first two years, which I refuse to do. So, it sure seems like our doctors all have their own opinions on how much monitoring is required. My two guys don't agree.

Love and Hugs,

Cindi

janaes

boy i hate that CA 125 marker

boy i hate that CA 125 marker.  My medical oncologist lives by it and in my opinion doesnt seem to understand that its not the only thing to go by.  I wish i had the answers to all this craziness because i want more answers too. 

Beccabtown i wish you peace as you you try ti sort through this stuff.

With love, Janae

txtrisha55

The CA 125 was not a good

The CA 125 was not a good test for me.  I started before surgery and it was 15 after surgery it went up but then came down after each chemo treatment.  During the last five years it stays around 13-15.  I have a report about understanding CA 125 Levels A Guide for Ovarian Cancer Patients from the Foundation for Women's Cancer Bynecologic Cancer.  It helps explain what the test is and how to read it.  I am sure you can google the name and it will come up.   foundationforwomenscancer.org   -  This is the web site.  The test works for some and not for others.  Praying for you and hope this helps. trish

 

 

Editgrl

Not a good marker for me

Mine was 8 before my hysterectomy, 6 during chemo, and settled at 7 after treatment.  My gyn/onc doesn't feel it's a good marker, and I haven't had another one since last March.

survivingsu

Not a great marker for me either, but still used

As I understand it my C-125 was always in the normal range, so it is not a great marker.  Still, my cancer had been an agressive one and so they want all the markers and I am required to have the C-125 test yearly.  It's expensive compared to other bloodwork so I wish I didn't have to have it done.  It's been 7 years since my cancer treatment and NED.  It had been at "7" for all those years after treatment and recently became 8, which freaked me out, but they weren't concerned.  I think they go by abrupt pattern changes, and if this occurs then they go to the scans, etc.  My surgeon said they go by how you feel, C-125 for any big changes, and then by CT, and if needed for further clarification, Pet Scans. 

Hope this helps!

Lou Ann M

CA125

I am one of the odd ones as the CA 125 has been very accurate for me, until now.  If it's number started to rise the cancer cells were on the war path again.  My oncologist's would say that maybe it was inflamation somewhere, but it would turn out to be new growth And when it was lower there would be shrinkage. Now, with the Keytruda, there are no  guide life's as to how it reacts with this treatment.  After the first one it rose to 875 after the second it fell to 460 and has been slowly falling for the last two.

Lou Ann

pinky104

survivingsu said:

Not a great marker for me either, but still used

As I understand it my C-125 was always in the normal range, so it is not a great marker.  Still, my cancer had been an agressive one and so they want all the markers and I am required to have the C-125 test yearly.  It's expensive compared to other bloodwork so I wish I didn't have to have it done.  It's been 7 years since my cancer treatment and NED.  It had been at "7" for all those years after treatment and recently became 8, which freaked me out, but they weren't concerned.  I think they go by abrupt pattern changes, and if this occurs then they go to the scans, etc.  My surgeon said they go by how you feel, C-125 for any big changes, and then by CT, and if needed for further clarification, Pet Scans. 

Hope this helps!

surviving su

Mine was accurate for me, but it was only in the low 90's when I had stage IVb UPSC, the highest stage there is.  After surgery and chemo, it was in the 7's for a few years, then 6's.  My last test came up a 9, and like you, I was convinced my cancer had come back.  I still wonder, as that test was done this summer. I'm at 6 years out.  I have to wonder if I'm being too lax with my diet or something. 

Soup52

I don't know what mine was

I don't know what mine was before treatment, but during and after mine has always been in the teens 13-16, so I kind of doubt that it's a good marker for me.

janaes

wow soup i thought i was the

wow soup i thought i was the only one who didnt know there number before treatment.  I was almost afraid to admit that.  I cant remember what my numbers have been during treatment but they have been good and steady i too dont think it is  a good marker for me either because no one knows what the number was before treatment. 

survivingsu

pinky104 said:

surviving su

Mine was accurate for me, but it was only in the low 90's when I had stage IVb UPSC, the highest stage there is.  After surgery and chemo, it was in the 7's for a few years, then 6's.  My last test came up a 9, and like you, I was convinced my cancer had come back.  I still wonder, as that test was done this summer. I'm at 6 years out.  I have to wonder if I'm being too lax with my diet or something. 

Lab techniques

Hi Pinky104,

With just a point or two in differences, another thing to keep in mind might be the labs themselves.  The minor fluctuations might reflect changes in protocols, etc. with the labs.  I just know that at this point my drs are not concerned, and I do not feel like my cancer has returned (thank goodness!). 

Keep on keeping on  :0)

beccabtown

So maybe some good(ish) news

So maybe some good(ish) news from the lab work that was done this week before my 5th round of chemo. My CA-125 hadn't been tested since August, before radiation and the 4th round of chemo (and a bad chest cold). This week it was down to 117. I know that sounds frighteningly high to some of you, but it's well below any of my previous results. I hope it's a sign that something is trending in the right direction in there. I won't be able to talk to either of my oncs about it until the end of the month.

My last chemo treatment will be on the 22nd, and I'm really starting to feel the anxiety of being "cut loose" from the structure of front-line treatment to wait and see what happens next. Actually, my doctor agreed to order a scan for the last week of December so I can have one more before my health insurance changes, so I will know something then about where I stand post-chemo. Someone suggested to me today that I should start planning some new hobbies to pursue in January.

bluehyacinth

Lou Ann M said:

CA125

I am one of the odd ones as the CA 125 has been very accurate for me, until now.  If it's number started to rise the cancer cells were on the war path again.  My oncologist's would say that maybe it was inflamation somewhere, but it would turn out to be new growth And when it was lower there would be shrinkage. Now, with the Keytruda, there are no  guide life's as to how it reacts with this treatment.  After the first one it rose to 875 after the second it fell to 460 and has been slowly falling for the last two.

Lou Ann

The CA125 works great for me.

The CA125 works great for me. I appreciate the marker and get it every 3 weeks with Keytruda along with a bunch of other blood tests so I can evaluate where I am at (I do a several other of other regiments as well). Apparently it often works well for UPSC being more like ovarian cancer and not that often for type 1 endo. 

With respect to Keytruda my oncologist who has/had many patients on Keytruda told me to expect the CA125 to go up after the first treatement and perhaps after the second because it creates a massive inflammatory reaction at onset thus the increase. Then it should start going down.  And sure enough mine also went up after the first and down after the second.  

TeddyandBears_Mom

Becca, First.... CONGRATS on

Becca, First.... CONGRATS on getting to your last chemo on the 22nd. My last one was 12/21/15 so my one year anniversary is almost here.  Please celebrate this major milestone. I think you will allow yourself to relax once you get the results of your scan. It does get easier with every new checkup.

For the first time in years we are going to put up a Christmas tree and other decorations. Part of our celebration of life. I'm going forward with positive thoughts and full expectations of a cancer free life. I hope you can get yourself to that point sooner than later. I don't mean to minimize the worry, but life is just too short to be in constant fear. All of us learn to live with this beast in our own way. I'm not going to say that it isn't in the back of my mind because it is.... But, I choose to push those ugly thoughts away and have become pretty good at it.

I hope you have minimal side effects so that you can enjoy the holiday season.

Love and Hugs,

Cindi

Nellasing

Congratulations Becca!

Your CA-125 numbers being down is great and here you are at your last chemo!!!  YAY!!!  Mine was Sept. 21, 2016 so I have only had one check so far in Oct. and my 2nd one is coming up Dec. 21st.  I know very well what you mean when you say "feel the anxiety of being "cut loose" from the structure of front-line treatment to wait and see what happens next."  It feels very weird and you do feel a little lost, at least I did.  I hope you get to ring the "bell of hope" that is a nice little period at the end of your treatment and a way to mark and celebrate the moment.  Then as you said, you have a scan coming up - my Dr. doesn't believe in scans unless there is something going on- it sort of adds to my anxiety as my CA-125 was also not a factor so there seem to be nothing to watch except how I feel.  But life has a way of coming back on line- all the things you might have put off or put on hold come back into play and you pick up and move on one day at a time and suddenly you are back into the swing of things 

Prayers for you as you finish up and start moving on... (((HUGS)))

NoTimeForCancer

Becca, what a nice 'gift'

Becca, what a nice 'gift' that last chemo will be for you.  As an FYI I had a follow up CT scan shortly after I ended my treatment as well.  I remember the anxiety of being 'cut loose' as you said.  There was comfort in seeing healthcare workers regularly and then - it was like jumping off a cliff.  Even when I went from quarterly to every six months follow-ups I felt that anxiety, and when I mentined that to my oncologist she said all I have to do is call and they would get me in to visit -which brought me comfort.  Please let us know when your treatment is complete.

P.S. - my last chemo was 12/19/12

beccabtown

Thanks for all the kind words

Thanks for all the kind words. I will certainly let you know when the final chemo is done. And congratulations to Cindi and NoTime for your upcoming anniversaries!

Lou Ann M

Beccca,

What a great Christmas present.  I hope you do something special to celebrate.  We get so used to seeing our doctors , then all of a sudden, we are cut lose.  Kind of a withdrawal.  I know I had anxiety waiting for those three months to.go by after I finished front line treatment.  

Hugs and prayers, Lou Ann

Lou Ann M

bluehyacinth said:

The CA125 works great for me.

The CA125 works great for me. I appreciate the marker and get it every 3 weeks with Keytruda along with a bunch of other blood tests so I can evaluate where I am at (I do a several other of other regiments as well). Apparently it often works well for UPSC being more like ovarian cancer and not that often for type 1 endo. 

With respect to Keytruda my oncologist who has/had many patients on Keytruda told me to expect the CA125 to go up after the first treatement and perhaps after the second because it creates a massive inflammatory reaction at onset thus the increase. Then it should start going down.  And sure enough mine also went up after the first and down after the second.  

Keytruda

You are the first person that I have heard of the is also on Keytruda.  Good to hear that the CA 125 may still be accurat.  It always has been for me. I kind of figured that the rise in numbers after the first infusion was from inflamation from my immune system attacking the cancer cells.  It was coming down until last time when it rose again..  I have a lot of inflamation caused by my SI joint and possible some diverticulitis going on. The tumor cells hat I have in my neck has increased in size.  I am thinking that is a good thing,  hopefully my I,unexpected system is attacking it some more.

Are you having any side effects?  I feel so much better than I did on chemo and have so much more energy that I don't know if some of the things going on are side effects or just old age.  I sure hope this works for both of us.  It is certainly a more humane way to treat this disease.

Hugs and prayers, Lou Ann