ca125 is normal, is it possible to be cancer?

Survivor73
Survivor73 Member Posts: 135
in Ovarian Cancer #1
Hi There...I am on the breast ca and thryoid ca boards. I am now having a hysterectomy in August due to large ovarian cysts that have not gone away. Just wondering if anyone on this board had a normal ca125 test, but still had a cancer diagnosis. I have many symptoms - heavy cycles, pain during sex, frequent urination, feel full all the time, fatigue (ok, that could be related to the other cancers...). And ultrasounds show many cysts - some not going away, some come and go. One that is persistant is 5cm.

Anyway, just wondering if any of you had a normal Ca125, but still found cancer.

Ok, I'm probably just being anxious, but with two cancers already this year, I have a reasonable worry for a third. The Dr is pushing for the surgery to check the cysts just to be sure and with my history is suggesting just get rid of it all...which I am ok with, so I don't think it's unreasonable to be concerned...

But, I don't know what to think anymore...

Thanks.
S73

Comments

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #2
    I agree with you
    having everything out soon. I think you can never be sure if it is cancer until the tumor is biopsied but it sounds good that your tumor markers are normal. Good luck on your surgery next month. You have been through so much as it is...val
  • lauripiper
    lauripiper Member Posts: 28
    #3
    think twice
    Endometriosis is a possible diagnosis and it is benign. I was diagnosed with endo when I was 27 and my ovaries were covered in cysts. Have you been tested for BRCA1? If you are positive then there can also be a raised risk of ovarian cancer and it might be a good idea to have it all out. But if it is benign and you are not near menopause then think twice about having a hysterectomy. Menopause is more than just hot flashes; fatigue, depression, losing concentration, bone loss, it effects skin, hair and muscle mass as well. It is a normal part of aging but don't rush it if you don't need to.
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    #4
    ca125
    Hi there...
    My CA125 recently went down from 9 to 6 which is low normal. It's unusual I think, but the CA125 test can show both false positives and negatives. It can help to track a person's progress but then mine has gone down and I have advanced primary peritoneal and have only just started treatment. The thing is, don't take much notice of the CA125 level as it can be elevated by other conditions in the body.

    If I were you, I'd take one day at a time and only worry majorly if or when. I know it's hard to put things out of the mind but thinking about things pre-diagnosis is almost as bad as having the knowledge itself. It was for me anyway.

    I'll be thinking of you. x
  • carolenk
    carolenk Member Posts: 907 Member
    #5
    lauripiper said:

    think twice
    Endometriosis is a possible diagnosis and it is benign. I was diagnosed with endo when I was 27 and my ovaries were covered in cysts. Have you been tested for BRCA1? If you are positive then there can also be a raised risk of ovarian cancer and it might be a good idea to have it all out. But if it is benign and you are not near menopause then think twice about having a hysterectomy. Menopause is more than just hot flashes; fatigue, depression, losing concentration, bone loss, it effects skin, hair and muscle mass as well. It is a normal part of aging but don't rush it if you don't need to.

    Menopause happens anyway
    Dear Survivor

    Menopause is gonna happen anyway. You have an unfortunate family history that makes you a higher risk for ovarian cancer no matter whether or not you have the BRACA mutations.

    I hope you are having a gyn/onc do your surgery--better to have one and NOT need one than to NEED one and not have one.

    Hoping for no more cancer for you,

    Carolen
  • sitchy57
    sitchy57 Member Posts: 27
    #6
    CA125
    Hi my CA125 count was 7 and I was dx with ovarian, uterine and appendix cancers. That is definately not a marker for any of my cancers. You really need to wait and find out what they find. I will be thinking of you. Sharon
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
    sitchy57 said:

    CA125
    Hi my CA125 count was 7 and I was dx with ovarian, uterine and appendix cancers. That is definately not a marker for any of my cancers. You really need to wait and find out what they find. I will be thinking of you. Sharon

    I had PCOS when I was young
    I had PCOS when I was young - multiple cysts, as large as plums. They were all totally non-malignant.

    I would have it all taken out, though. With your history, I think it's best to be pro-active.

    Carlene
  • Survivor73
    Survivor73 Member Posts: 135
    #8
    Hissy_Fitz said:

    I had PCOS when I was young
    I had PCOS when I was young - multiple cysts, as large as plums. They were all totally non-malignant.

    I would have it all taken out, though. With your history, I think it's best to be pro-active.

    Carlene

    Thanks
    Hi All. I am having it all taken out, scheduled for Aug 9th...I have just gotten my surgery date for my reoccurant thyroid cancer (July 6th), so that is to be dealt with first.

    I had a biopsy done last week of my uterine lining...it was thick on the last ultra sound - 4cm...so she did a biopsy. (How thick should it be??)

    So, waiting...just don't know what I'll do if it comes back as bad news...

    So, surgery, get better from that, then surgery again...wait for pathology...then Radiation for the thyroid so it doesn't come back again...oh, ya...maybe I'll get back to living a normal life around November...assuming all tests are good...during all of this I will be seeing a specialist to look into the disease sarcoid that was found during the lymph node surgery...if they send me for any tests, I'll scream!!

    I've just finished rads for my breast cancer...had 2 surgeries for it in Jan and Feb.

    Don't know how much more I can take this year.

    Sorry for going on and on...I'm just tired...and rambling....:) I will get through all of this...I'm just getting fed up of being sick...

    Take care all,

    S73
  • anicca
    anicca Member Posts: 334 Member
    #9
    Survivor73 said:

    Thanks
    Hi All. I am having it all taken out, scheduled for Aug 9th...I have just gotten my surgery date for my reoccurant thyroid cancer (July 6th), so that is to be dealt with first.

    I had a biopsy done last week of my uterine lining...it was thick on the last ultra sound - 4cm...so she did a biopsy. (How thick should it be??)

    So, waiting...just don't know what I'll do if it comes back as bad news...

    So, surgery, get better from that, then surgery again...wait for pathology...then Radiation for the thyroid so it doesn't come back again...oh, ya...maybe I'll get back to living a normal life around November...assuming all tests are good...during all of this I will be seeing a specialist to look into the disease sarcoid that was found during the lymph node surgery...if they send me for any tests, I'll scream!!

    I've just finished rads for my breast cancer...had 2 surgeries for it in Jan and Feb.

    Don't know how much more I can take this year.

    Sorry for going on and on...I'm just tired...and rambling....:) I will get through all of this...I'm just getting fed up of being sick...

    Take care all,

    S73

    So sorry you are going through all this!
    I agree with the other posters who say you just can't tell for sure with CA-125, and that it's better not to take chances.

    They don't usually biopsy the uterine lining unless it's at least 10cm, but your history may be why your doctor wanted to do it.

    I am hoping for the best for you. You certainly don't need anything else to deal with! Please come back and tell us how it goes. We love good news and do our best support those with bad.

    DB
  • mopar
    mopar Member Posts: 1,972 Member
    #10
    Survivor73 said:

    Thanks
    Hi All. I am having it all taken out, scheduled for Aug 9th...I have just gotten my surgery date for my reoccurant thyroid cancer (July 6th), so that is to be dealt with first.

    I had a biopsy done last week of my uterine lining...it was thick on the last ultra sound - 4cm...so she did a biopsy. (How thick should it be??)

    So, waiting...just don't know what I'll do if it comes back as bad news...

    So, surgery, get better from that, then surgery again...wait for pathology...then Radiation for the thyroid so it doesn't come back again...oh, ya...maybe I'll get back to living a normal life around November...assuming all tests are good...during all of this I will be seeing a specialist to look into the disease sarcoid that was found during the lymph node surgery...if they send me for any tests, I'll scream!!

    I've just finished rads for my breast cancer...had 2 surgeries for it in Jan and Feb.

    Don't know how much more I can take this year.

    Sorry for going on and on...I'm just tired...and rambling....:) I will get through all of this...I'm just getting fed up of being sick...

    Take care all,

    S73

    IT'S NOT RAMBLING
    You're not rambling - your concerns and anxiety are to be expected, considering all that you are going through. You are definitely the true definition of 'Survivor'!

    Please let us know how your surgeries go, including for the thyroid. Sending lots of prayers and hugs to you.

    Monika
  • Survivor73
    Survivor73 Member Posts: 135
    #11
    mopar said:

    IT'S NOT RAMBLING
    You're not rambling - your concerns and anxiety are to be expected, considering all that you are going through. You are definitely the true definition of 'Survivor'!

    Please let us know how your surgeries go, including for the thyroid. Sending lots of prayers and hugs to you.

    Monika

    Thank you
    Thanks so much for all of your responses...I will update you once I know more...should get the biopsy results on Wednesday...one down...many to go.

    Take care all.
    S73
  • lauriejw
    lauriejw Member Posts: 7
    #12
    Hi! My CA125 was normal and
    Hi! My CA125 was normal and I have ovarian cancer stage 1c. My biggest advice is to have a gyn/oncologist do the surgery. My gyn did the surgery and didn't follow protocol even though we discussed it prior to surgery. He thought it was just an endometrioma. If I could do it over I would never go into surgery without a gyn/oncologist. Read all you can about ovarian cancer prior to surgery even if you think it is just a cyst. Valuable information that would have changed the course of decisions I made. God Luck and God Bless!

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