Choosing not to monitor CA-125 unless symptomatic

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LaundryQueen
LaundryQueen Member Posts: 676
in Ovarian Cancer #1
I finally found this article about research that I had heard about regarding whether there is any benefit to monitoring CA-125 after remission in the absence of symptoms.

http://www.medscape.com/viewarticle/703649

I'll be meeting with my oncologist this week & I'm gonna ask him if he's OK with me not monitoring any cancer bio-markers (CA-125 or HE4) UNLESS I am symptomatic.

He has already said that I am a lot more in tune with my body than his average patient. I am sure that if I have a recurrence, I'll know. And it looks like there's no survival benefit to starting second or third-line chemo unless symptomatic.

The article doesn't address imaging so I'll have to talk about that, too.

Comments

  • kikiz
    kikiz Member Posts: 94
    #2
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    Good Article
    This was a good article. I can understand you wanting to skip the CA-125 unless you are symptomatic. Sounds like you are doing great.

    My only fear with this arcticle is I believe a while back, they recommended going by the ca125 instead of the scans. I worry that news like this will encourage the insurance companies to limit something for us. I did notice in the article that one of things they mentioned was cost savings for insurance.

    Lets hope that they can find a cure or a way to find it earlier so that the next generation doesn't have to worry about either ones.

    Lori
  • kikz
    kikz Member Posts: 1,345 Member
    #3
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    kikiz said:

    Good Article
    This was a good article. I can understand you wanting to skip the CA-125 unless you are symptomatic. Sounds like you are doing great.

    My only fear with this arcticle is I believe a while back, they recommended going by the ca125 instead of the scans. I worry that news like this will encourage the insurance companies to limit something for us. I did notice in the article that one of things they mentioned was cost savings for insurance.

    Lets hope that they can find a cure or a way to find it earlier so that the next generation doesn't have to worry about either ones.

    Lori

    I know there is a lot of discussion
    as to how reliable the CA 125 is. I would be too scared not to monitor with the CA 125 because by the time I had symptoms I was Stage IIIc and my symptoms were not that bad. I wish I could have felt something long before so the cancer would not have had so much time to spread.

    Kikiz - I notice we have a very similar screen name. How did yours come about?

    Karen
  • kayandok
    kayandok Member Posts: 1,202 Member
    #4
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    I must say you are a brave
    woman, to even consider this! I think the reasoning is there, and I am curious what your onc will say. When I was in remission (8 glorious months off chemo and with a CA125 of 5 or 6) I did not live with fear that it would return, but did get a monthly blood draw. In fact, that is probably what kept me from letting my thoughts go down the fear road. I also consider myself being pretty in tune with my body, and sure enough when I have some weird little sypmtoms, the CA seems to always confirm it (way before the scan does). I still would not have been able to rely on my instincts, and not be fearful.

    There is one argument against not getting regular CA125 checks, especially for first time remission. THat is, if you recurr in ONE spot with a "bulky tumor" (defined by 2 or 3cm by most onc's) then surgery (potentially lap) to remove that tumor, can be a consideration before starting up treatment again. There is some research on that too, and I don't have it at my finger tips. Recurring in one or two spots is not the norm it seems though, and so you don't hear about it ofen. OvCa typially recurrs in many tiny little spots through out.

    I did recurr in a couple spots, confirmed by a rising CA first, and then a PET. I had my spleen and part of my small colon removed. There was as small spot on the cava vein, which was scraped off with an argon laser, but mm did remian. That part is now 2.7 cm after 2 years of chemo off and on. I did find a doctor who said he would remove it and reconstruct the cava vein, IF and ONLY IF there was a chemo that would work on me. That has not been the case, unfortunately, so I have ruled it out.

    I know this may be TMI but my thoughts when I read your post.

    k
  • childofthestars
    childofthestars Member Posts: 251 Member
    #5
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    Monitoring CA125
    Hi
    My Oncologist doesn't monitor his patients CA125 etc (unless they want it)in fact i think he may have even written the article, i know one of his articles appeared in an English newspaper earlier this year. Anyway apparently research has shown that there is no advantage in starting treatment if the CA125 rises and the patient is not symptomatic. Better results are achieved when symptomatic. I have chosen NOT to have my CA125 checked, i'm coming up for my 2nd post chemo f/up end of this month.
    Michelle x
  • kikiz
    kikiz Member Posts: 94
    #6
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    childofthestars said:

    Monitoring CA125
    Hi
    My Oncologist doesn't monitor his patients CA125 etc (unless they want it)in fact i think he may have even written the article, i know one of his articles appeared in an English newspaper earlier this year. Anyway apparently research has shown that there is no advantage in starting treatment if the CA125 rises and the patient is not symptomatic. Better results are achieved when symptomatic. I have chosen NOT to have my CA125 checked, i'm coming up for my 2nd post chemo f/up end of this month.
    Michelle x

    Kikz
    I always hate to admit it but my middle name is Makanaiki. I was always Kiki for short since it is such a mouthful. Z is for my last name. My family and friends always used it, so until I was older, I thought it was my name. How did you you come up with yours.

    Lori
  • pstur1
    pstur1 Member Posts: 37
    #7
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    Not sure about this....
    Hey all, I certainly understand your reasoning for being a bit cautious of the CA125 results but I am one of those people that has a couple of spots that do NOT show on the scans. At this point, monitoring my CA125 is our measure to watch even though as you have pointed out the pros and cons, this measure works for me in particular. My last count in March was 79 I think and it keeps increasing while I am still not exhibiting any symptoms. Until they come up with something better, something more telling, this is my way to monitor.

    In summation, I don't really have a clue what I am saying here other than we each have to make decisions for ourselves regarding our care or the monitoring of our cancer but I would hate for someone to screw up simply because they read this and felt the CA125 is a wash, it is not. But I fully respect and on some levels understand your take on this.

    I have to give blood today so that when I see my chemo onc tomorrow he can tell me my new increased numbers....hahaha. Come to think of it, other than this making a nice line graph, I am not sure what my numbers are telling me now....hahaha. Okay, not funny but I do have to find humor in this somewhere right?

    I guess if given the choice, I want them to monitor everything they can in an effort to monitor my progress or lack there of. So, let's not poo-poo the CA125 just yet and like someone else said....LET'S NOT GIVE THE INSURANCE COMPANIES ANY MORE REASON TO SCREW WITH US!!!! Do as you choose but with me and I am saying ME, not anyone else, this test is a fine measure for where I am now in this cancerous journey.

    Thank you for your time ladies! Be well and keep up the fight!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #8
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    My Oncologist has already
    My Oncologist has already spoken to me about this and has suggested that they will only act if I become symptomatic. I am happy to go along with this as I truely believe the longer you can go without chemo the better. My CA125 rises even when my scan results are positive. I will still have my bloods and numbers monitored but the doctors won't put me back on chemo unless I became ill.

    Tina
  • cfont11
    cfont11 Member Posts: 115
    #9
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    CA 125 Monitoring
    I finished my last chemo on 5/2. My CA125 had been going up but is not down to 88.4, still not in normal range. I will have a couple of more tests and how those come out will determine what comes next for me. However, my medical oncologist and my gync/onc both said I will have CA125 tests every 2 months.

    Have you had HE4 tested? My onc said it was not available for commercial use it. I had read about it on one of the discussions so I asked her. She knew all about it but said it was not ready for use yet. Has anyone else had HE4 test?

    Chris
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #10
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    cfont11 said:

    CA 125 Monitoring
    I finished my last chemo on 5/2. My CA125 had been going up but is not down to 88.4, still not in normal range. I will have a couple of more tests and how those come out will determine what comes next for me. However, my medical oncologist and my gync/onc both said I will have CA125 tests every 2 months.

    Have you had HE4 tested? My onc said it was not available for commercial use it. I had read about it on one of the discussions so I asked her. She knew all about it but said it was not ready for use yet. Has anyone else had HE4 test?

    Chris

    I am 14 months NED and my
    I am 14 months NED and my doctor suggested we just do the CA125 every 3 months. I told him I would have a heart attack, so we compromised on every other month.

    I wish I could be more "que cera, cera" about the stupid cancer thing.

    Carlene
  • tomcat 59
    tomcat 59 Member Posts: 5
    #11
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    Hissy_Fitz said:

    I am 14 months NED and my
    I am 14 months NED and my doctor suggested we just do the CA125 every 3 months. I told him I would have a heart attack, so we compromised on every other month.

    I wish I could be more "que cera, cera" about the stupid cancer thing.

    Carlene

    12 MONTHS NED
    I HAVE NOT POSTED FOR OVER A YEAR. I WAS GETTING TO SCARED, AFTER ALL THE SURGERY AND CHEMO I AM STILL SCARED I DECIDED TO RETURN ONLY TO SEE SOME MEMBEERS HAVE PASSED AWAY
    I AM SCARED OF REACCURANCE AND I KNOW WE ARE ALL DIFFERENT BUT WHAT IS THE LIFE EXPENCY
    I WAS STAGE 4 I KEEP TRYING TO FIND SOME INFO THAT WILL PUT MY MIND AT EASE. I THINK ABOUT IT EVERY DAY EVEN WHEN I AM CANCERFREE. MY CA125 IS 12 IT HAS BEEN GOING UP 1 POINT FO THE LAST 4 TESTS THAT I HAVE EVERY 3-4 MONTHS. CAN ANYONE HELP?????????


    TOMCAT 59
  • carolenk
    carolenk Member Posts: 907 Member
    #12
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    tomcat 59 said:

    12 MONTHS NED
    I HAVE NOT POSTED FOR OVER A YEAR. I WAS GETTING TO SCARED, AFTER ALL THE SURGERY AND CHEMO I AM STILL SCARED I DECIDED TO RETURN ONLY TO SEE SOME MEMBEERS HAVE PASSED AWAY
    I AM SCARED OF REACCURANCE AND I KNOW WE ARE ALL DIFFERENT BUT WHAT IS THE LIFE EXPENCY
    I WAS STAGE 4 I KEEP TRYING TO FIND SOME INFO THAT WILL PUT MY MIND AT EASE. I THINK ABOUT IT EVERY DAY EVEN WHEN I AM CANCERFREE. MY CA125 IS 12 IT HAS BEEN GOING UP 1 POINT FO THE LAST 4 TESTS THAT I HAVE EVERY 3-4 MONTHS. CAN ANYONE HELP?????????


    TOMCAT 59

    Tough call
    Dear LaundryQueen

    At first, I wasn't sure you were REALLY serious about not monitoring the CA-125. However, there are others who are already somewhat on board with the new research findings. It seems to be the UK ladies who are guided by the new research (unless I am mistaken).

    I think I am such "an information junkie" that I would want to know my CA-125 numbers one way or another. Whether to wait to treat til symptomatic or not is another issue.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #13
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    Other than chemo
    Knowing what I know about alternative and integrative treatments, I would want to get agressive with these modalities if my CA-125 started to climb, before becoming symptomatic, so that I may be able to avoid having to have surgery or chemo.
  • kikz
    kikz Member Posts: 1,345 Member
    #14
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    kikiz said:

    Kikz
    I always hate to admit it but my middle name is Makanaiki. I was always Kiki for short since it is such a mouthful. Z is for my last name. My family and friends always used it, so until I was older, I thought it was my name. How did you you come up with yours.

    Lori

    How I came to be Kiki
    I used to babysit my cousin's son and was teaching him everyone's name. He only seemed to have trouble with mine. When I told him to say Karen, he would say Kiki and it stuck. The Kikz came because I wanted a personalized license plate for my car and all the variations of Kiki I tried were taken. I thought of Kikz as in Kik's but most people don't get it. They ask what is the z for?

    Karen
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #15
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    Tethys41 said:

    Other than chemo
    Knowing what I know about alternative and integrative treatments, I would want to get agressive with these modalities if my CA-125 started to climb, before becoming symptomatic, so that I may be able to avoid having to have surgery or chemo.

    Yeah, that's a good
    Yeah, that's a good point...I guess the research didn't include people doing integrative therapies, just the standard of care.

    I will see where the oncologist is on this matter.

    I appreciate everyone's input; it helps me a lot.

    thanks,

    LQ
  • carolenk
    carolenk Member Posts: 907 Member
    #16
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    LaundryQueen said:

    Yeah, that's a good
    Yeah, that's a good point...I guess the research didn't include people doing integrative therapies, just the standard of care.

    I will see where the oncologist is on this matter.

    I appreciate everyone's input; it helps me a lot.

    thanks,

    LQ

    What about your doctor visit this week?
    LaundryQueen

    Just wondering how your visit with the oncologist went?

    Carolen
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #17
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    carolenk said:

    What about your doctor visit this week?
    LaundryQueen

    Just wondering how your visit with the oncologist went?

    Carolen

    Doctor visit
    Yes, Laundry Queen, how did the visit go?
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #18
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    Tethys41 said:

    Doctor visit
    Yes, Laundry Queen, how did the visit go?

    Just waiting around...
    The visit with the oncologist was kind of brief as he was backed up dealing with women who needed "the big explanation" (like I was on my first visit) and there wasn't much to talk about with me anyway since I didn't have any blood work or scans done.

    I told the oncologist that I feel normal again and he joked that he doubted that I was ever normal at all! True, true, true...

    The bottom line is that the oncologist is OK if I wait until the end of July to check the CA-125 again (that would be @ a 4-month interval). Depending on the next test result, I could wait to jump back onto the chemo train if the number was jacked up but I still felt fine.

    He had said as much in an earlier visit that if the CA-125 was "creeping up" significantly, I may want to watch and wait or go ahead and initiate some other chemo treatment depending on how I feel.

    He didn't think that taking the 6th carboplatin treatment would offer me much benefit at this time as my MRI didn't show any active cancer and the last CA-125 (at the end of March) was <10.

    He also said "Anything that I might do right now (referring to second-look surgery or laproscopy) would probably just make things worse." He never offered to have me do a PET scan and I didn't ask for one.

    On the other hand, the integrative osteopathic doctor wants to know what the CA-125 is at the beginning of June. That doctor feels (like Kate [Tethys41] said) there might be more that I could be doing that is non-chemotherapy; in which case, there is no advantage to waiting til the end of July to start that.

    In the meantime, I am waiting around like just about everyone else on the board.

    I am still having the ascorbic acid (vitamin C) IVs twice weekly AND acupuncture AND taking about 20 tablets/capsules of nutritional/herbal supplements twice/day AND doing my best to follow the anticancer way of life.

    I went to my daughter's birthday party and passed up the cake...I didn't even miss it.

    Thank all of you for your input.

    LQ
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #19
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    cfont11 said:

    CA 125 Monitoring
    I finished my last chemo on 5/2. My CA125 had been going up but is not down to 88.4, still not in normal range. I will have a couple of more tests and how those come out will determine what comes next for me. However, my medical oncologist and my gync/onc both said I will have CA125 tests every 2 months.

    Have you had HE4 tested? My onc said it was not available for commercial use it. I had read about it on one of the discussions so I asked her. She knew all about it but said it was not ready for use yet. Has anyone else had HE4 test?

    Chris

    To answer your question Chris [cfont11]
    Chris: I didn't mean to ignore your question. I had the HE4 tested twice. The blood sample was sent to the Mayo Clinic and the test was covered by my insurance (once I had met my deductible).

    The first reading was before surgery when I was hoping I only had ovarian cysts and not ovarian cancer. The result was >300 (normal is <150). The second test was done when I finished the first-line chemotherapy (March, 2011) and the result was 26.

    My family doctor ordered the test for me. The oncologist doesn't pay any attention to it.

    Thanks for reminding me about this.

    LQ

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