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CA125 test

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

I'd like to set the record straight on the CA125 test from my point of view ... obviously!

Some women who are diagnosed with ovarian/primary peritoneal cancer at a late stage have a normal CA125 reading throughout the course of their treatment. This was the case with me and remains the case.

However, if the CA125 reading is elevated at the time of diagnosis, then this marker can be a useful indicator that the disease is stable or is on the move. A high CA125 reading in this case can also mean that the disease is stable but that there is something else going on. For example, a woman who has ovarian cancer and who has an elevated CA125 doesn't necessarily need cancer treatment. She may have another benign condition such as fibroids or endometriosis.

When I began to ask for my CA125 reading, I was told that the result wasn't available. Since then, I've learnt that the result isn't given to women as having it without other information can make them unnecessarily anxious. I can't understand why patients would be sent their CA125 result in the mail so that they can open it up as if they were about to see whether they had passed an exam or not. Then there's the waiting for the post and the expectation dashed or not.

I think paying too much attention to the CA125 test can be an invasion into a time in a woman's life which is precious. For me, between chemos is my space to live normally. Well, not normally in any sense exactly but not having to wait for doctors appointments, treatments, CT scan appointments and the like gives me some time to try to forget what is happening to me.

Pattyn
Posts: 45
Joined: Feb 2012

I do agree with you. I was told that any result under 35 was a good sign and anything over 35 wasn't necessarily a bad sign. Very confusing as I had a result of 21 and had cancer.....

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

Personally, I would be really uncomfortable not knowing my CA-125 both during and after treatment.

myfmlyrox's picture
myfmlyrox
Posts: 7
Joined: Jun 2012

I think the CA125 test is an important marker, but not the 'end all'. The CT scan provides more specific information. But in my case, in Feb. 2008 I had pain in my upper abdomen and constipation. I went to my family physician and asked for a full physical, as I hadn't ever had one and I wanted a baseline for myself - I was 47. I requested a CA125. The Dr. hesitantly ordered one. It came back "abnormal". At the time, I didn't know "good" numbers from "bad" numbers, and didn't ask for the number. He ordered a vaginal ultrasound and a colonoscopy. Both results were fine. Nothing further was done. In March 2010 I was diagnosed with Stage3C ovarian cancer, and had a full hysterectomy, ooberectomy, and they also took part of my omentum. It was AFTER this surgery that I finally educated myself about the CA125 numbers. I also went back to the Dr. from 2008 to get that CA125 number. I found out that my abnormal CA125,was 132- definately high. Pre surgery 2 years later, my CA125 was 1480! After surgery, 420, then declined gradually with the IP chemo. After the full cycle of IP with Cisplatin/Taxol, my CA125 was at 19. We stopped chemo and monitored my CA125. 3 months after - 24. 6 months after 128. I began maintenance chemo at that time - May 2011, and have been on it with various drug protocols, ever since. There has not been a break in over a year. My CA125 has gone only as low as 72 - but as high as 540, during this maintenance chemo. Bottom line - the CA125 is the ONLY test for ovarian cancer. I think that every woman should have one routinely when they begin having pap smears (which does not detect OVCA). Get their personal "normal" number, and then monitor it, along with the subtle symptoms that go along with OVCA. I also think that Drs. need to be more educated about OVCA. Had my initial Dr who got the "abnormal" CA125 been a little more proactive (and myself, for that matter) he should ordered a follow up CA125 in 6 months. I do not blame him for the situation I am in today - actually, I blame myself. If we educate ourselves with the facts, are candid with our Drs and insist that they be the same with us, we have the knowledge to move through this. I also do not agree with EVER sending results in the mail. During this entire time, I have either talked to my Dr in person or he has called me directly. So I do think we need to pay attention to the CA125, be educated and proactive in our own health, but not obsess over it. It isn't the end-all, but it is all we have.

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I agree that a CA-125 should be done annually for a woman who has not been diagnosed with ovarian cancer. I had heard this long ago and asked for one annually with my annual pap. Timing is everything. I had a CA-125 a year before my diagnosis and it was 9. One year later, once they finally got around to doing it, it was 4,600. I wonder what it was 6 months after my annual exam.

igahmah2
Posts: 3
Joined: Jun 2012

I agree. Because when I asked my oncologist the other day about the C125, she said they haven't been tracking that because I had breast cancer not Ovarian cancer. I just think it would be smart to be pro active and get a number for everything as a marker. Then if something changes, BINGO, go get it checked.

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Myfmlyrox...
I do agree with you about the CA125 test being very useful for tracking women who have elevated readings at the time of diagnosis. I think your point is that yours was elevated and your condition was still not picked up. I insisted on a CA125 test in 2006 and my reading was 9. When I went into hospital to have my gallbladder removed in 2009, the fluid in my abdomen wasn't checked for evidence of malignancy. In fact, for the whole of this time, I did have cancer which was low grade. The cancer was slow growing and continued to grow after I was discharged at the clinic post op. Even though I am at an advanced stage now, my CA125 last time I went to clinic was 10. I specifically asked for it to see if the situation had changed and I did have elevated numbers. I suppose my point is that if doctors get it into their heads that a marker for ovarian/peritoneal cancer is a raised CA125, this means that people in my situation can be missed too and their symptoms discounted and being put down to some other benign condition. I'm really glad that I don't have to watch for CA125 results which I know would stress me out very much.

myfmlyrox's picture
myfmlyrox
Posts: 7
Joined: Jun 2012

I am confused. Your CA125 has never been elevated, but you have OVCA? What is "low grade cancer". There was fluid in your abdomen and they didn't check it? That was very irresponsible of them. How was it detected and diagnosed and how do you monitor it now that you are at the advanced stages? If the CA125 test cannot be used for you, then what do the Drs use to monitor your cancer? Does anyone know of someone who HAD elevated CA125 numbers (over the 100 mark) and did NOT have OVCA? In otherwords, we know that a low number doesn't not mean NO CANCER. But does a high number always mean there IS Cancer? Patti

kikz's picture
kikz
Posts: 1284
Joined: Jun 2010

my results every three months. I can call my onc two days after the test but I do receive the results in the mail about a week later. I have no problem with that and in fact the last few times have waited for the mail to bring my results.

My last result went from 8 to 23; it had previously been betwen 3 and 7. I was alarmed and spoke to my onc who said she was concerned as well. She told me to have another blood test in two months which was this past Tuesday.

As I write this I don't know what the 2-month follow up result is. I could have called today but I have my 6-month checkup tomorrow and chose to wait. I didn't know if my onc would call me so after my hike and haircut I went shopping. I left the house at 8:30 this morning and got home at 5:30.

I didn't get a call from my onc so I am hoping that is a good sign. I have been in remission for 19 months and fell great. I have no symptoms at all.

I will post my news when I get it. I have posted about this before so excuse me if you already read about it.

Karen

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Karen...
I could see from your post that the CA125 was fundamental to how you keep a check on your illness. From my point of view, as I said, I'm glad mine isn't elevated. When I say that to people, they usuually say, 'Oh good' or 'Great!' but they're not good replies at all. What I was saying is that I'm at an advanced stage but my score is never going to be out of the normal range because the disease can't be monitored at all by this kind of test. I suppose how we deal with this illness is different for everyone, but I'm just glad I'm out of the whole monitoring by numbers thing as I know it would make me anxious.

Gottalovelife
Posts: 45
Joined: Feb 2012

Just gonna say I hate CA125, those numbers scare me more than anything. Why can't things just be simple, why does everything have to be so difficult, we go through enough and I know women say they can go up and down but I don't like it one bit, want mine to stay one number and to quit bouncing up and down.

debrajo's picture
debrajo
Posts: 796
Joined: Sep 2011

AMEN!!! Mine is all over the place also, but never over 17.2 except before surgery(42) I hate those flipping,d@#$m numbers! debrajo

mopar
Posts: 1954
Joined: Apr 2003

I agree with all of you, because we all come from a different point of view. For me, I would rather know my level every few months than not know. An 'up and down' scenario isn't a big deal. We determined that for me, it's a consistent rise (without lowering) that indicates something is going on. The minor changes, as long as it goes back down, doesn't send me into a frenzy. I realize there's all kinds of reasons for a slight rise in numbers.

Some of you may remember I posted a few years back that the doctor had given me Boniva to take. Although I wasn't keen on it, I followed doctors orders. The next 3 weeks were horrible. Bone pain, fever, etc., etc. That same time frame, I had another CA125 test. It had risen from my usual 13/14 to 48! Now this time, you can bet I was shocked. However, I was willing to bet that it was due to the Boniva. Three months later, my level was certainly back down to my 'normal'. So, since I am not in treatment for OVCA at the present time, I will simply watch for any upward swing in numbers.

Hugs and Prayers to all of you ladies!

Monika

Bransman
Posts: 4
Joined: Feb 2013

My wife was diagnosed with stage 1 Ovarian cancer in 2007.  We were trying to have kids and were very lucky that they found it so early.  She had a full hysterectomy and chemo.  She has been a champion through it all.  After chemo was over her CA125s have always been around 6 or 7 and have NEVER increased only decreased.  We were ready to celebrate as she was going in for her 5 year tests and scans last week.  Her CA 125 jumped to a 10.5.  We just found out about an hour ago.  This was very scary to hear after 5 years of no increases.  They did say that the CT scans did not show anything to be concerned about but we are still nervous about this increase.  Has anybody else had this happen and what did you do?  Her doctors in Tennessee were AWESOME!   We moved to Oklahoma 2 years ago and her doctor here is overworked and simply does not give the care or communicate like her doctor in TN so we are nervous that she is not getting good care.  He is the only GO on her insurance plan so we are stuck with him.  Her doctor in TN told us before we moved to keep a close eye on her CA125 levels.  He said that if it creeps up a point or two and then another and then another that it is a good indicator that something is going on.  So you can imagine that hearing it go from 6 to 7 to 10.5 in the past 6 months has me concerned.  

 

Alexandra's picture
Alexandra
Posts: 1271
Joined: Jul 2012

CA125 fluctuations do not necessarily mean that your wife's cancer is active. Small increase could be attributed to a different lab testing blood or having a cold or a number of other innocent reasons. Doctors look at the trend rather than absolute increase. In her case I would 1) retake the test to make sure it was accurate; 2) take another one in 3 months. If CA125 keeps rising - ask for CT scan, if not - great.

Good luck

Bransman
Posts: 4
Joined: Feb 2013

Alexandra, Thank you.  She had her 5 year scans last month and according to her doctor they both came back ok.  He just stopped taking her insurance so we are now looking for yet another gyn/oncologist.  I have read what you said aout this test fluctuating and we do plan on going back to her primary care doc and asking for another CA125 in a month or so.  Her gyn/oncologist in TN who was awesome told us before we moved to keep a close eye on the CA125 as it is very good an deteting a reaccurance. He told us that if her regular basline of 6-7 goest to 8 then 10 then 12 that there is a good chance that something could be happening.  The other thing is that I have read that the CA125 is a very early indicator as it is measuring cell reactions prior to them becoming tumors.  While we are very excited that her scans came back clear we cant help but be concerned about the elevated CA125 as a possiblity of things to come.  

I come from a long line of worryers and she is my life so this has been a very difficult day.  I cant show her that I am worried so I get it all out on boards like this.   

123Miley's picture
123Miley
Posts: 94
Joined: Jan 2013

CA125 has proven to be a very reliable tool in managing the progress of my disease and for the most part I have been pretty neurotic about it.  But I really do agree with you.  After living with this for nearly 6 years I have sort of changed my attitude - these days I am oddly unconcerned with finding out. I guess I am tired of focusing on it.  

I started Doxil in January for a second reoccurrance.  When we started my marker was 116 and after my first treatment it was 190.  I had my blood work done this Monday following my second treatment.  I have not checked yet and I won't.

I am now fine with just waiting until my next appt.   I mean it is what it is.  I have cancer and I am back on treatment.  But I feel pretty good and whether my marker is a little up or a litttle down at any given time -  well that is not going to change anything in the short term.  So why fret over it?   I'll just find out when I go see my doctor and go from there.  When members of my family ask I just shrug and say  "I haven't checked.  I will find out in a couple of weeks when I go back for my next treatment."  That is usually followed by a moment of silence and then something very unsatisfied sounding like "ohhh...well, ok"  

So although I am enjoying my new found freedom from not obsessing over my CA125, my family doesn't seem to share the same appreciation!  LOL!

A side note - I have never gotten mine in the mail!  I mean wow!  They ususally get my results back the same day or the following morning at the latest. I would call and they were really good about getting me the info as soon as they had it.  But never in an email or mail!  They never left it in a voice mail either.  If I missed their call - they would leave a message to call me back.  Also glad I am not sitting around jumping every time the phone rings - thinking it might be them calling back with results!

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