Test other than CA125

cfont11
cfont11 Member Posts: 115
in Ovarian Cancer #1
I once saw something about a test for ovarian cancer, I think it is called HE4? Does anyone know anything about this? Is it available yet? I hate the CA125 test. Mine has been up and down and then up. I had second surgery in Jan. and chemo in April and May. Had 6 chemos prior to that after surgery to remove blockage in colon. Blockage was from tumor but I was too sick to have tumor removed at that time. Had a CT scan in June and doctor told me scan was clean and I was in remission. Since then, my CA125 has continued to go up. It went up to 49 and then to 55 so I was retested after 2 weeks. Dr. thought it still might be affects from surgery or something abdominal. I have an ileostomy and have diarrhea quite often. Got results today and ot went up to 98.5. Could I have a recurrence this soon? Having a CT scan Friday and I am so nervous. It seems like the CA125 is so unreliable, I wish there was something else. Thanks for listening.

Comments

  • carolenk
    carolenk Member Posts: 907 Member
    #2
    HE4
    Yes, there is another test but the range doesn't seem to be reliable... it goes up to 150 as normal but the cutoff is probably lower though I don't know how much lower. When I have it done, it has to go to the Mayo Clinic and it takes over a week to get the results.

    I think the HE4 test MIGHT be useful for someone who does not show elevation in the CA-125 even though they had a history of cancer.

    If you did have the CA-125 elevation show up when you had your original diagnosis, it is probably good to keep watching it.

    There really is no good test for those of us who are dealing with OVCA or primary/secondary peritoneal cancer either.

    If your CA-125 number is bouncing around, ask for a PET/CT to see if you can find cancer somewhere else than the abdomen/pelvis. Even though the PET/CT uses radioactive sugar to find the cancer, the radioactivity has a very short half life (it's gone in two days) and the information is very helpful.

    I hope nothing "lights up" on your PET/CT scan if you do get one.

    Carolen
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #3
    Tests
    cfont11,
    I never dispute what CarolenK has to say. She's an expert as far as I'm concerned. I do have the HE4 test every couple of months even though my CA-125 seems to be a very good indicator for me. I think my oncologist is testing it out on me, because I introduced her to the test after reading about it online. I also work with a naturopath who orders it for her ovarian cancer patients. She believes that anything below 50 is in the normal range. She has a more restrictive range on most tests than what the lab says is normal.
    I also get other tests ordered by my naturopath, however, that give a clue as to whether there is cancer growing, or trying to grow, in my body. I defer to CarolenK on these, but I've been told the following tests can help indicate cancer activity:
    AMAS
    C-reactive protien (high sensitivity or cardio)
    sed rate and alk phos
    CarolenK, any input on these?
  • cfont11
    cfont11 Member Posts: 115
    #4
    carolenk said:

    HE4
    Yes, there is another test but the range doesn't seem to be reliable... it goes up to 150 as normal but the cutoff is probably lower though I don't know how much lower. When I have it done, it has to go to the Mayo Clinic and it takes over a week to get the results.

    I think the HE4 test MIGHT be useful for someone who does not show elevation in the CA-125 even though they had a history of cancer.

    If you did have the CA-125 elevation show up when you had your original diagnosis, it is probably good to keep watching it.

    There really is no good test for those of us who are dealing with OVCA or primary/secondary peritoneal cancer either.

    If your CA-125 number is bouncing around, ask for a PET/CT to see if you can find cancer somewhere else than the abdomen/pelvis. Even though the PET/CT uses radioactive sugar to find the cancer, the radioactivity has a very short half life (it's gone in two days) and the information is very helpful.

    I hope nothing "lights up" on your PET/CT scan if you do get one.

    Carolen

    HE4
    Carolen,

    Thanks for the info. I agree that you are a wealth of information and I value and appreciate your knowledge. My oncologist told me the HE4 test is not available yet but maybe she meant in NH. Thanks again.
  • cfont11
    cfont11 Member Posts: 115
    #5
    Tethys41 said:

    Tests
    cfont11,
    I never dispute what CarolenK has to say. She's an expert as far as I'm concerned. I do have the HE4 test every couple of months even though my CA-125 seems to be a very good indicator for me. I think my oncologist is testing it out on me, because I introduced her to the test after reading about it online. I also work with a naturopath who orders it for her ovarian cancer patients. She believes that anything below 50 is in the normal range. She has a more restrictive range on most tests than what the lab says is normal.
    I also get other tests ordered by my naturopath, however, that give a clue as to whether there is cancer growing, or trying to grow, in my body. I defer to CarolenK on these, but I've been told the following tests can help indicate cancer activity:
    AMAS
    C-reactive protien (high sensitivity or cardio)
    sed rate and alk phos
    CarolenK, any input on these?

    Tests
    Thank you so much for all the info. Where do you get the HE4 test done? I am having a regular CT scan on Friday so we will see what happens. My CA125 has been all over the place from the beginning so I think my oncologist does not know what to think about it and she has no explanation for the ups and downs.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #6
    cfont11 said:

    Tests
    Thank you so much for all the info. Where do you get the HE4 test done? I am having a regular CT scan on Friday so we will see what happens. My CA125 has been all over the place from the beginning so I think my oncologist does not know what to think about it and she has no explanation for the ups and downs.

    HE4 test
    My general oncologist runs the HE4 test. She has to send the blood out to the lab that tests for it, so it takes about a week to get the results. I hope you find out why your numbers are so crazy.
  • pattysoo
    pattysoo Member Posts: 170
    #7
    HE4
    I've been tested with the HE4 for about 10 months. I've recently moved to NH from WV and am seeing a doctor at Dana Farber. In both cases the doctors have ordered the test at my request. I've now decided to suspend the HE4 since I am comfortable with how the results matched favorable with the CA125. Thus I've decided that the CA125 is accurate for me and there's no need to do the other at this time. The doctor concurred. In both locales the HE4 results came about a week later, having been sent to lab corps in WV and Quest in Boston.
  • carolenk
    carolenk Member Posts: 907 Member
    #8
    Tethys41 said:

    HE4 test
    My general oncologist runs the HE4 test. She has to send the blood out to the lab that tests for it, so it takes about a week to get the results. I hope you find out why your numbers are so crazy.

    Other cancer markers
    This is a murky area. If you are on an anti-inflammatory program (diet, herbs, etc.), the sed rate & c-reactive protein could be low. An elevated ferritin level will indicate cancer activity--it is another inflammatory marker.

    I don't know what to think of the AMAS test--it seems to be a better test when you are just looking for cancer rather than monitoring it.

    Tethys, I wish I was an expert in this arena; I am doing the best I can to understand how to survive & when to worry.

    One of my many doctors told me the he had a patient with a high CA-125 & ascites but her problem was parasites!

    As an OCVA survivor, cfont, you are more likely encountering cancer activity than anything else. Wouldn't it be nice to know what you did "right" to get the number to go down?!

    I wish you the best.

    Carolen

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