I have no marker with the CA125 test

sitchy57
sitchy57 Member Posts: 27
in Uterine/Endometrial Cancer #1
I have no CA125 test as a cancer marker. I had a test done last July and it came back 7. My gyn. said it looked like nothing wrong but sent me for a ulta sound inside and outside. That showed that my uterus was a bit thick and he suggested that I have a D&C and a lapro. surgery. When they got in with the lap. they found that my right ovary had a large tumor on it. They quickly removed the large ovary with a bit larger incision. They biopsied my uterus and at the time of the surgery the doctor told my family that none of it looked like cancer. When the pathology report came back the doctor didn't believe they were both positive to having endmetrial cancer. He immediately sent me to a gyn.- onc. in another city. The new doctor took all the reports and said we need to do a extensive hyst. That was done Sept. 8th, 2010 the uterus and the left ovary were removed along with the omenthum and the appendix. They also removed 30 lymph nodes at the time of the surgery and took samples all around my abdomin. The results came back and I had the endo. cancer of the uterus along with the ovarian cancer separate from the endo. cancer. Then the big surprise was appendix cancer which they removed and thought it had a couple of stones in it. The appendix cancer happened to be 2 very rare and aggressive cancers. I guess I can thank God that I originally went to the ER to have a pain in my lower right abdomin. The doctor on call did a ct scan and said I should follow up with a gyn. I called right away and that is when everything started. I had chemo treatments of carbo/taxol for the ovarian cancer and internal radiation which is called Brachy Therapy for the uterine . They were concerned that the colon might have been involved with the appendix cancer so I had a colonoscopy and a pet scan and all looked clear.
I am now concerned without a marker CA125 how will they know if there is any reaccurance. I was very fortunate that all three cancers were independent and primary and there was no mets. They were all discovered at stage 1 with different grades. I am scared that I will have to have so many scans that I will get too much radiation. Sincerely Sharon

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #2
    My oncologist weighs the risks of radiation from scans ....
    If CA125 isn't a good indicator for you, you will have to vigilantly rely on paying attention to any symptoms, although honestly I've NEVER had symptoms and wouldn't be able to tell them from chemo side affects if I did! But a good gyne-oncologist can tell from an internal exam if anything suspicious is happening in that area. & I would ask if you can get CT-scans every 3 months for the next couple of years. The peace of mind is well worth the radiation exposure, in my opinion, when CA125 isn't a reliable marker for you. ((((Sharon)))
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    Hi Sharon:
    Don't be afraid
    Hi Sharon:

    Don't be afraid of the scans. Like Linda says, the benefits of getting the scans outweigh any risks of exposure. I have had plenty of scans. Now when they say I don't need one, I get anxious because it is the best way of detecting anything.

    Sorry about all of your diagnosis but am glad you were able to find all three early. My best to you in all of your treatments.

    Kathy
  • sleem
    sleem Member Posts: 92
    #4
    Kaleena said:

    Hi Sharon:
    Don't be afraid
    Hi Sharon:

    Don't be afraid of the scans. Like Linda says, the benefits of getting the scans outweigh any risks of exposure. I have had plenty of scans. Now when they say I don't need one, I get anxious because it is the best way of detecting anything.

    Sorry about all of your diagnosis but am glad you were able to find all three early. My best to you in all of your treatments.

    Kathy

    CA 125 are used best for ovarian I've been told by 2 drs. & read research. It is only thing uterine has going for it right now.
    CA 125 can have false & positive errors. When I was diagnosed my CA 125 was around 14-normal range, my scans were normal--- visual normal---& yes I did have UPSC at the time. So, keep that in mind. I try to do that too as my CA 125 maybe is rising now. Hospital changed methodology in testing & doesn't know if that is what cause the spike. Cancer must be large enough to see on a scan.

    Good luck.
  • california_artist
    california_artist Member Posts: 816 Member
    #5
    Sharon Yikes
    I have never heard of so many different cancers striking all at once. Have you considered sending slides of the different cancers to another lab to have that difference corraborated? In this instance a second opinion is absolutely warranted.

    That looks like my light house, do you live in the UP????

    As for the radiation. You are right to be concerned about any number of CT scans, which give you oodles of radiation. However, there is something called a PET/CT, which relys on a tracer attached to sugar molecules, is the easiest way to explain it, that doesn't use the huge number of slices a CT does and exposes you to about 1/500 the radiation as that from a CT. It will also locate cancers that may have metastisized that are larger than 1cm.

    I refuse CT's. Due to the number and scope of your cancers, even should your insurance company refuse to pay, it is highly likely that an appeal would make them reconsider.

    Follow the food threads on this board and start learning about how you can help your body recover from this cancer. I would suggest for the time being, you give up meat and start eating smaller amounts of protein based on animal products.

    Look particulary at the threads about anti cancer and turmeric.

    I think you can beat this, if you adopt new habbits. Cancer cells apparently really liked somethings you had been doing.

    Best of luck,

    Claudia

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