Help, high CA 125, small cyst on ovary. A need to worry?

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ramdougall
ramdougall Member Posts: 3
edited March 2014 in Ovarian Cancer #1
Thank you for taking the time to look at this. I realize there are many of you that are much further in to this and my heart goes out to all of you.

I am 35 years old and a mother of two young children. I was recently told my CA 125 test came in at 44, which my doctor found to be high, he then suggested I get a private CT scan right away, as this could be ovarian cancer until he discovered it would be over $2000.00 for me to get one done. He suggested I wait for my scheduled CT scan as it would make no difference except that I would know the results sooner. He then sent me for an Ultrasound right away and they found a small cyst, which he said could be nothing at all. My aunt passed away yesterday of a year long battle with cancer and I am now starting to panic every time I look up more info. The waiting is unbearable. How did you deal with the anxiety of the waiting?

I have been referred to a Gyno which I will see in two weeks. I also have a CT scan next Tuesday, thankfully I only had to wait just over a month. I have had most of the symptoms, listed on the cancer web site, of Ovarian cancer for quite some time but have thought nothing of them. Has anyone heard or been through an experience like this that turned out to be ovarian cancer?

I would appreciate anything you have to say about all or a small part of this. Thank you in advance for your kindness in replying to this posting.

Comments

  • Lisa13Q
    Lisa13Q Member Posts: 677
    #2
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    HI and SAME SItuation
    HI Ramdougall,

    NO PANIC necessary. You are in a very common situation. My CA-125 came back 44 (amazing isn't it?) This, by the way, one month after my mother was diagnosed with advanced OVCA. By the way they consider 44 a mild elevation, not severe at all. If you said 400 or 1400, that's different. Anyway, the doctor immediately did a trans-vag ultrasound. It's not nearly as expensive as a cat scan and they do it immediately. They can see a lot, and it's over in 20 minutes. It's easy and it might help alleviate any anxiety you had now until you got in to the gyn. Mine was done the day the CA-125 came back. They say a small fibroid, but nothing to be concerned about. CA-125 can be elevated by many things. If you are still menstruating, if you have endometriosis, and many other conditions can cause that. It's a lousy diagnostic tool. It's a great tool for recurrence, though. After the trans vag, just to be careful, they followed up and did a 2nd CA-125, and it was mildly elevated and after looking into family history, and doing a great deal of homework, I did decide to do a prophylactic ovarectomy. NO CANCER was there. My point in all this is, I wouldn't jump to any major conclusions under your circumstances. And, ask for a Trans vag ultrasound in the mean time if that would help because there' nothing worse than anxiety.

    Currently, my mother has advanced OVCA, my grandmother died from ascites related cancer and so did my great grandmother. So I was at great risk. I am also menopausal.

    I also got into a gyn/onc right away who was a true expert in all this and her confidence and understanding of the disease was amazing. My point here is make sure you have a gyn. who knows this disease. It can be tricky. Also, there are early symptoms of OVCA, digestive issues, urgency to pee, bloating etc. Remember CA-125 is a lousy diagnostic tool and you are doing everything absolutely right! You sound like you are doing all the right things, a CT scan will show everything. Take a deep breath, and we will all pray for you!! Please keep us posted!!
  • mopar
    mopar Member Posts: 1,972 Member
    #3
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    HANG IN THERE
    As Lisa mentioned, a gyneologic/oncologist is the best choice as far as a 'second opinion'. Even then, unfortunately, you won't always know beyond a shadow of a doubt that it's cancerous until they operate. But, take one thing at a time and come back and let us know what you find out. The CA125 can be elevated for lots of reasons, even a simple cyst, an infection such as the flu or a cold.

    Till then I'm sending prayers and hugs your way, and good thoughts, too!

    Monika
  • ramdougall
    ramdougall Member Posts: 3
    #4
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    Lisa13Q said:

    HI and SAME SItuation
    HI Ramdougall,

    NO PANIC necessary. You are in a very common situation. My CA-125 came back 44 (amazing isn't it?) This, by the way, one month after my mother was diagnosed with advanced OVCA. By the way they consider 44 a mild elevation, not severe at all. If you said 400 or 1400, that's different. Anyway, the doctor immediately did a trans-vag ultrasound. It's not nearly as expensive as a cat scan and they do it immediately. They can see a lot, and it's over in 20 minutes. It's easy and it might help alleviate any anxiety you had now until you got in to the gyn. Mine was done the day the CA-125 came back. They say a small fibroid, but nothing to be concerned about. CA-125 can be elevated by many things. If you are still menstruating, if you have endometriosis, and many other conditions can cause that. It's a lousy diagnostic tool. It's a great tool for recurrence, though. After the trans vag, just to be careful, they followed up and did a 2nd CA-125, and it was mildly elevated and after looking into family history, and doing a great deal of homework, I did decide to do a prophylactic ovarectomy. NO CANCER was there. My point in all this is, I wouldn't jump to any major conclusions under your circumstances. And, ask for a Trans vag ultrasound in the mean time if that would help because there' nothing worse than anxiety.

    Currently, my mother has advanced OVCA, my grandmother died from ascites related cancer and so did my great grandmother. So I was at great risk. I am also menopausal.

    I also got into a gyn/onc right away who was a true expert in all this and her confidence and understanding of the disease was amazing. My point here is make sure you have a gyn. who knows this disease. It can be tricky. Also, there are early symptoms of OVCA, digestive issues, urgency to pee, bloating etc. Remember CA-125 is a lousy diagnostic tool and you are doing everything absolutely right! You sound like you are doing all the right things, a CT scan will show everything. Take a deep breath, and we will all pray for you!! Please keep us posted!!

    Thank you
    Thank you very much for sharing your story with me. I do have a lot of the symptoms such as bloating, pressure, urgency to pee, weight loss,pain during intercourse and the list goes on which is why I have such concern at this point. I have had a regular ultrasound where it showed a small cyst on my right ovary. I am having a CT on Tuesday so I should find out more the following week when I have my first visit with a Gyno.

    It was so nice of you to take the time to send me a message, so Thank you. I will be thinking of you and send my best wishes to you and your family.
    Take care
    A
  • ramdougall
    ramdougall Member Posts: 3
    #5
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    mopar said:

    HANG IN THERE
    As Lisa mentioned, a gyneologic/oncologist is the best choice as far as a 'second opinion'. Even then, unfortunately, you won't always know beyond a shadow of a doubt that it's cancerous until they operate. But, take one thing at a time and come back and let us know what you find out. The CA125 can be elevated for lots of reasons, even a simple cyst, an infection such as the flu or a cold.

    Till then I'm sending prayers and hugs your way, and good thoughts, too!

    Monika

    when to pursue further?
    Thank you for your reply. I am assuming a big cyst started out as a small cyst, when do you know when to pursue if the doctor says to leave it alone? When would you ask for a second oppinion? I have recently discovered doctors are not as forthcoming as I would like to believe, and have found that if I believe something I must push for someone to listen and do something. At least with my current experience with my daughters doctors.

    Thank you again for taking the time to talk to me. Take care.
    A
  • tngirl
    tngirl Member Posts: 28
    #6
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    ramdougall said:

    when to pursue further?
    Thank you for your reply. I am assuming a big cyst started out as a small cyst, when do you know when to pursue if the doctor says to leave it alone? When would you ask for a second oppinion? I have recently discovered doctors are not as forthcoming as I would like to believe, and have found that if I believe something I must push for someone to listen and do something. At least with my current experience with my daughters doctors.

    Thank you again for taking the time to talk to me. Take care.
    A

    CA-125
    My CA-125 prior to dx was 71 and I was dx with Stage IIC. I also had most of the symptoms you mentioned, but never thought it was cancer. I would get that CT scan as soon as possible.

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