Mom's CA125 and a question

BrittanyC
BrittanyC Member Posts: 100
edited March 2014 in Ovarian Cancer #1
My mom is on coumadin, a blood thinner for her blood clots.

She called me while I was at work, because she has been having bad gas. She called the Cancer Care Alliance and they said she has a lot of gas. While she was in the hospital at the end of July, the nurse there said she has a lot of backed up gas from the partial bowel obstuction. So the gas is normal, thank god!

Anyways, she gets blood testing done to see what her blood levels are for the coumadin dosage. The cancer care alliance said that her CA125 went down AGAIN!!

It is now 163.

My mom began to cry. She was so happy. I was shocked and I almost dropped the work phone LOL !
It was 288 not so long ago.

My mom is advised to stay away from the fried food. She can't help but love her chicken, but she needs to because it causes gas.

I have some questions as well.
I will be getting a blood test done at my doctors tomorrow.

Is the CA125 really accurate to detect ovarian cancer ahead of time?
Do transvaginal ultrasounds need to be asked to have? How are they done exactly?
Can a normal doctor do genetic testing for the cancer genes?
What is the difference between cancer ON the organs and IN the organs?
I noticed that the incision site on my mom's abdomen / pelvic area is hard. Is it from the cancer perhaps?
I've seen posts by women that say they are stage 4B.. what is that? I didn't know stage 4 had stages as well..

Thank you ladies :)
BTW, September is Ovarian Cancer awareness!! I bought teal nail polish and I'm actually going to keep wearing it until my mom feels good :)

Comments

  • Cindy54
    Cindy54 Member Posts: 452
    #2
    Your Questions
    Hi Brittany...That is great news about your Moms' numbers going down. Lets pray that they continue to do so. I will try to answers some of your questions..

    1. The CA125 is one of many ways to detect ovarian. It also can be elavated by other things besides ovarian, so that is why they seldom use this alone as a marker for ovarian. They take into consideration your history, your family history and any other symptoms you are having. If you have some other symptoms and then the CA125 is elavated, this raises a flag for the doctor. Then he looks further.
    2.If the doctor suspects something, he will order one of these. Or if you are having symptoms ask.This is the test where they put a "wand" inside you . They would probably do a regular ultrasound first and then the internal one.
    3. The genetic test is done because of a recommendation from your gyno. It is pretty costly and a lot of insurances don't cover it, even if you have a strong family history to back up the need for the test.
    4. On the organs means the cancer is outside the ovary and has possibly sent some cells to other organs in the area. In the organs means just that...inside an organ, an ovary. Sometimes the caner is just inside the organ and has not had a chance to spread yet.
    5. Incisions sometimes feel hard as they heal..scar tissue. The area around my belly button has scar tissue and seems "hard" to the touch, but it is just from the incisions there, twice.

    Hope some of this helps. I know there are others who will chime in here with some more detailed info for you. And I think the teal nail polish is a great thing...it is a good conversation starter to remind women to get checked for ovarian. Hugs to you and your Mom...Cindy
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #3
    Cindy54 said:

    Your Questions
    Hi Brittany...That is great news about your Moms' numbers going down. Lets pray that they continue to do so. I will try to answers some of your questions..

    1. The CA125 is one of many ways to detect ovarian. It also can be elavated by other things besides ovarian, so that is why they seldom use this alone as a marker for ovarian. They take into consideration your history, your family history and any other symptoms you are having. If you have some other symptoms and then the CA125 is elavated, this raises a flag for the doctor. Then he looks further.
    2.If the doctor suspects something, he will order one of these. Or if you are having symptoms ask.This is the test where they put a "wand" inside you . They would probably do a regular ultrasound first and then the internal one.
    3. The genetic test is done because of a recommendation from your gyno. It is pretty costly and a lot of insurances don't cover it, even if you have a strong family history to back up the need for the test.
    4. On the organs means the cancer is outside the ovary and has possibly sent some cells to other organs in the area. In the organs means just that...inside an organ, an ovary. Sometimes the caner is just inside the organ and has not had a chance to spread yet.
    5. Incisions sometimes feel hard as they heal..scar tissue. The area around my belly button has scar tissue and seems "hard" to the touch, but it is just from the incisions there, twice.

    Hope some of this helps. I know there are others who will chime in here with some more detailed info for you. And I think the teal nail polish is a great thing...it is a good conversation starter to remind women to get checked for ovarian. Hugs to you and your Mom...Cindy

    Some answers maybe
    CA 125 is a marker for all kinds of cancers. The doctors gave one to my sister yesterday. OVCA is so hard to detect that my bet is you and I will be getting out own blood tests now as well, especially if you do genetic testing and it indicates a mutation. The test is not a great marker though because there are many other physiological activities that can make it elevated. The test is essentially measuring proteins that the C cells leave behind as they metabolize. Many other cellular activities also leave proteions behind. But it is better than nothing.
    The issue with Ovarian cancer is that if it's cause is genetically rrealted to a specific gene, we offspring are far more likely to get this disease ourselves. I recieved this informatioon last week from my motehr's oncologist. She insists that my mother be tested. If she is posistve then she wants to test us. If she is not positive for this mutation than there is no need to be tested. I think since my mother has been diagnosed the insurance will cover her testing and if she is positive, there is more of an argument for us to get tested and have insurance pay. If she is not, there is no reason to be tested. Anyway, bottom line is there is a strong chance, as daughters, we are susceptible to thi disease. My mother called today to make sure I had mae an appointment with my doc. You might want to conside some of these things as well. Although you look much younger than I!!
  • BrittanyC
    BrittanyC Member Posts: 100
    #4
    Lisa13Q said:

    Some answers maybe
    CA 125 is a marker for all kinds of cancers. The doctors gave one to my sister yesterday. OVCA is so hard to detect that my bet is you and I will be getting out own blood tests now as well, especially if you do genetic testing and it indicates a mutation. The test is not a great marker though because there are many other physiological activities that can make it elevated. The test is essentially measuring proteins that the C cells leave behind as they metabolize. Many other cellular activities also leave proteions behind. But it is better than nothing.
    The issue with Ovarian cancer is that if it's cause is genetically rrealted to a specific gene, we offspring are far more likely to get this disease ourselves. I recieved this informatioon last week from my motehr's oncologist. She insists that my mother be tested. If she is posistve then she wants to test us. If she is not positive for this mutation than there is no need to be tested. I think since my mother has been diagnosed the insurance will cover her testing and if she is positive, there is more of an argument for us to get tested and have insurance pay. If she is not, there is no reason to be tested. Anyway, bottom line is there is a strong chance, as daughters, we are susceptible to thi disease. My mother called today to make sure I had mae an appointment with my doc. You might want to conside some of these things as well. Although you look much younger than I!!

    Thank you Cindy and
    Thank you Cindy and Lisa.

    Many things are cleared up for me :)

    I already had a yearly exam and am due next year. I will be switching gynos and be sure to push the subject of it.

    Lisa - I found out my great aunt had ovarian cancer. She passed in her 40's of it. Now my mom has it. I have a feeling that there may be a gene that is in my family. I am scared, but I do want to get tested. My mom does not want me to go through this. I'm only 22, but any woman can get Ovarian Cancer!!

    I have insurance, but I have to call them soon to see if it covers for genetic testing. I am curious.
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #5
    BrittanyC said:

    Thank you Cindy and
    Thank you Cindy and Lisa.

    Many things are cleared up for me :)

    I already had a yearly exam and am due next year. I will be switching gynos and be sure to push the subject of it.

    Lisa - I found out my great aunt had ovarian cancer. She passed in her 40's of it. Now my mom has it. I have a feeling that there may be a gene that is in my family. I am scared, but I do want to get tested. My mom does not want me to go through this. I'm only 22, but any woman can get Ovarian Cancer!!

    I have insurance, but I have to call them soon to see if it covers for genetic testing. I am curious.

    Well Brittany,

    I am 49 so we are of very different ages, but yes if your great Aunt had it, I suspect there may be some genetic link. My grandmother and great grandmother died of cancer, but it was assumed to be liver cancer as their bellies were so swollen. What does that sound like to you? I would suggest you get some feedback from your mothers onc. about what s/he recommends. Here at Sloane, they were adamant that my sister and I be checked and they gave her a CA-125 and I am getting one next month. It is vwery serious if we have the gene, but many many research studies exist looking for ways to screen this disease and I am betting we can contribute greatly to the advancement of science if we do have it. We are way ahead of the game just by knowing we have the gene.

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