CA 125 elevated due to endometriosis? - how much?

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Hi,

This is my first post and I’d like to say that I am so sorry about all the heart-wrenching stories I read on these boards. My heart goes out for everyone who needs to be here.

I am an extremely concerned husband of the love of my life, and I am scared beyond words about her. Our story briefly is that she has been diagnosed with stage IV severe Endometriosis early in her life, when she was 19 years old. She is 35 now. She likely had the disease before, but it was only diagnosed at that age. She had 2 laparoscopic surgeries to remove the endometrial adhesions, some on her ovary, and some in the belly elsewhere. The disease was widespread. She also has an endometrial nodule in the cul-de-sac that cannot be operated on. Long story short, of course we could not get pregnant, so we finally ended up trying IVF. She had 3 rounds of IVF with very poor results. We were just about to give up, and had a final consult with our doctor this Tuesday. He did another vaginal U/S and discovered an “irregular shaped cyst” on her left ovary. He said he did not know what it was, and he ordered some tests. I almost fell of the chair when I saw CA 125 was one of them. My darling took the tests. The AFP came back low, but her CA 125 is high, at 274! I know that endometriosis can elevate CA 125 and I also know that taking the test during her period is also not a good idea, but 274 sounds like a lot. I read and re-read the Internet for the past 3 days and I cannot find the answer: if one takes the CA 125 during period (3rd day) and has severe endo, can she have such elevated results on the CA 125 without a malignant condition? Please, please, please give me some hope that she is free of this monster. She has been through so much already with the failed IVF’s and all the suffering from severe endo pain through her life. I am absolutely scared sh1tless (sorry) about this.

Many thanks and God Bless,
Gabe
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Comments

  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
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    Hello
    Please do not borrow trouble, the ca125 is not a good marker to diagnose ovarian cancer. It can be elevated for anyone of the reasons you stated.this is not medical advice but yes it's possible your wife does not have cancer.
    It is not easy but take a breath and wait to hear from your dr.
    If the news is bad you will deal with whatever it is.
    Good luck
    Colleen
  • HusbandOfAnAngel
    Options

    Hello
    Please do not borrow trouble, the ca125 is not a good marker to diagnose ovarian cancer. It can be elevated for anyone of the reasons you stated.this is not medical advice but yes it's possible your wife does not have cancer.
    It is not easy but take a breath and wait to hear from your dr.
    If the news is bad you will deal with whatever it is.
    Good luck
    Colleen

    Thank you
    Thank you Colleen, you're absolutely right, I need to breathe and not scare myself into a ball of nerves. I feel so bad about this, given that I should be her "Rock" and instead I am such a mess. Time to man up...
  • Glad to be done
    Glad to be done Member Posts: 569
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    Hello
    Please do not borrow trouble, the ca125 is not a good marker to diagnose ovarian cancer. It can be elevated for anyone of the reasons you stated.this is not medical advice but yes it's possible your wife does not have cancer.
    It is not easy but take a breath and wait to hear from your dr.
    If the news is bad you will deal with whatever it is.
    Good luck
    Colleen

    Endometriosis can cause a CA
    Endometriosis can cause a CA 125 level to rise. Anything irritating the abdomen can make it rise,

    On the flip side my CA 125 level was in the high 200's the day I went in for my hysterectomy.

    Please don't get too far ahead of yourself. What does the doctor think of the result? Is she going to have a scan?
  • HusbandOfAnAngel
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    Endometriosis can cause a CA
    Endometriosis can cause a CA 125 level to rise. Anything irritating the abdomen can make it rise,

    On the flip side my CA 125 level was in the high 200's the day I went in for my hysterectomy.

    Please don't get too far ahead of yourself. What does the doctor think of the result? Is she going to have a scan?

    Hi
    Her Dr said that he was concerned about the elevated CA 125 and he is referring her to another surgeon at the University Hospital. This cyst was not there 4 months ago, then he discovered it 2 months ago just before her last IVF cycle but said he was not worried about it at that time and that he would "keep an eye on it". Then, just this week on our last visit he took another U/S and saw that it was still there. It is 20mm and it has an "irregular shape". We are now waiting for the referral appointment. I think this will end up with another laparoscopic surgery, since I believe there is no definitive way to diagnose this growth without looking at it.
  • Glad to be done
    Glad to be done Member Posts: 569
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    Thank you
    Thank you Colleen, you're absolutely right, I need to breathe and not scare myself into a ball of nerves. I feel so bad about this, given that I should be her "Rock" and instead I am such a mess. Time to man up...

    Don't get ahead of yourself
    Don't get ahead of yourself yet and let your mind run away. Also, don't you worry about being her Rock. You already are by seeking out information aand joining here for support. When she needs you the most you will be there for her. I think we all come out of this thinking "my husband is the best husband in the world". My husband was my rock from the day of diagnosis and still. He totally took over with our boys and the house and shopping and everything else I normally do. Don't be afraid to cry with her too. She will not see you as weak. We cried together a few times when my mind took off on me.... He would find it for me and level me out.

    You can come here and ask any question. We talk about it all here. No question to strange or groos. LOL..

    Keep us posted on how things proceed... Good Luck to you and your wife

    Eileen
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
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    Hi
    Her Dr said that he was concerned about the elevated CA 125 and he is referring her to another surgeon at the University Hospital. This cyst was not there 4 months ago, then he discovered it 2 months ago just before her last IVF cycle but said he was not worried about it at that time and that he would "keep an eye on it". Then, just this week on our last visit he took another U/S and saw that it was still there. It is 20mm and it has an "irregular shape". We are now waiting for the referral appointment. I think this will end up with another laparoscopic surgery, since I believe there is no definitive way to diagnose this growth without looking at it.

    Glad you found these discussion boards.
    Do not look up things on the Internet as it is very scary, hard not to do but then if you do take everything you read with a grain of salt. This is someone elses story, it is their diagnose not your wifes. I (56) am from the Uterine cancer boards but it seems we all cross to different boards especially if it is women's issues. My CA was 15 before I had a hysterectomy last year. After surgery it jumped to 169. My gyn onc dr told me that anytime anything is going on in the adombin that the CA could rise. A co-worker had a polyp that just turned out to a cyst, not cancer. Added both of you to my prayer list. Try not to get ahead of yourselves with a lot of worry. Good luck. trish
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
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    Glad you found these discussion boards.
    Do not look up things on the Internet as it is very scary, hard not to do but then if you do take everything you read with a grain of salt. This is someone elses story, it is their diagnose not your wifes. I (56) am from the Uterine cancer boards but it seems we all cross to different boards especially if it is women's issues. My CA was 15 before I had a hysterectomy last year. After surgery it jumped to 169. My gyn onc dr told me that anytime anything is going on in the adombin that the CA could rise. A co-worker had a polyp that just turned out to a cyst, not cancer. Added both of you to my prayer list. Try not to get ahead of yourselves with a lot of worry. Good luck. trish

    Dear Gabe
    You and your wife have every reason to be hopeful. As the other ladies have said, there are many non-cancer reasons why the CA number could be high. You sound like a terrific husband who is understandably scared and worried. I'm glad you found this board. Please come here anytime you need support, information, etc. You can let it all hang out here. A real man is not afraid to express his true feelings, as you have done here. Please keep us posted!

    Take care,

    Kelly
  • mopar
    mopar Member Posts: 1,972 Member
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    WELCOME GABE
    I'm sorry you and your wife are in this situation. But I agree with the other ladies - sit tight and don't get too far ahead of yourself. I have a long, long history of endometriosis as well. I should say 'had', because at 44 years old I developed ovarian cancer. Nonetheless, I know the pain your wife (and you) have gone through. And beyond a shadow of a doubt, the CA125 can elevate because of this condition, and well as a long list of other reasons. And this 'nodule' or 'growth' that they see could be a cyst totally unrelated to cancer.

    Please keep us informed. Until then, I will pray that your wife will find relief from this pain, that both of you will find strength to get through this rough time, and that the Lord will give you Hope in it all. We are here for you both.

    ((HUGS)) & Prayers,
    Monika
  • HusbandOfAnAngel
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    mopar said:

    WELCOME GABE
    I'm sorry you and your wife are in this situation. But I agree with the other ladies - sit tight and don't get too far ahead of yourself. I have a long, long history of endometriosis as well. I should say 'had', because at 44 years old I developed ovarian cancer. Nonetheless, I know the pain your wife (and you) have gone through. And beyond a shadow of a doubt, the CA125 can elevate because of this condition, and well as a long list of other reasons. And this 'nodule' or 'growth' that they see could be a cyst totally unrelated to cancer.

    Please keep us informed. Until then, I will pray that your wife will find relief from this pain, that both of you will find strength to get through this rough time, and that the Lord will give you Hope in it all. We are here for you both.

    ((HUGS)) & Prayers,
    Monika

    Thank you
    Many thanks for Everyone for the support and encouragement. You are wonderful people.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
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    Thank you
    Many thanks for Everyone for the support and encouragement. You are wonderful people.

    Angel of a husband
    The ladies here are very supportive an d can answer just about any question you have. Ca125 can be elevated by many things..bladder infection.flu or cold etc. Hang on and hopefully you will get the news that can help your wife....I pray it is not cancer. Post when you can...Val
  • sleepy hollow
    sleepy hollow Member Posts: 3
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    Angel of a husband
    The ladies here are very supportive an d can answer just about any question you have. Ca125 can be elevated by many things..bladder infection.flu or cold etc. Hang on and hopefully you will get the news that can help your wife....I pray it is not cancer. Post when you can...Val

    CA 125
    hello - I found your answer very interesting on the CA 125 - I am worried since my CA 125 has jumped to 55 - and had been around 29 for a few months. I also have just found that my thyroid is acting up again and I am hypothyroid and I have thyroid antibodies - this is an auto immune condition - can you tell me some of the things that can raise the CA 125 - can hypothyroidism do this and have you ever heard of that? thank you for whatever insight you can provide. You mentioned bladder infection , flu cold - have you experienced with yourself or others that the CA 125 can rise for all these reasons?
  • ahusband
    ahusband Member Posts: 1
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    CA 125
    hello - I found your answer very interesting on the CA 125 - I am worried since my CA 125 has jumped to 55 - and had been around 29 for a few months. I also have just found that my thyroid is acting up again and I am hypothyroid and I have thyroid antibodies - this is an auto immune condition - can you tell me some of the things that can raise the CA 125 - can hypothyroidism do this and have you ever heard of that? thank you for whatever insight you can provide. You mentioned bladder infection , flu cold - have you experienced with yourself or others that the CA 125 can rise for all these reasons?

    similar situation

    I googled and came across this post.... my wife has had endometriosis since before we met. She had laproscopic surgery done 12 years ago. We had our only child as soon as we got married. On and off she would hurt during the periods. It has gotten worse this year and eventually she got it checked 6-7 weeks ago. Her CA125 was high on Nov, doctor thought it was due to the endometrioisis. She went for follow up this past Thursday and the CA125 shows increased levels from last month. The doctor is now worried. Not sure if the fact that both tests were around the last days of period cycle along with endometriosis have anything to do with it. Last month the ultrasound did not show anything. Today my wife is going through the CT scan with Barium. Have surgery scheduled for Friday if it is endometriosis related. I hope it is.

     

    Loved the guy's post because we are supposed to be the strong ones and it is strange how strong the women are. Real proud of my wife. Sometimes it is hard to express that. I have been very quite last 3 days and not sure if she is taking that as I don't care or knows that I am struggling with her situation and a hot mess due to it. I have this sinking feeling and glad that I found this avenue to post and share some of my thoughts and feelings.

     

    Pray for us.

  • Alexandra
    Alexandra Member Posts: 1,308
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    ahusband said:

    similar situation

    I googled and came across this post.... my wife has had endometriosis since before we met. She had laproscopic surgery done 12 years ago. We had our only child as soon as we got married. On and off she would hurt during the periods. It has gotten worse this year and eventually she got it checked 6-7 weeks ago. Her CA125 was high on Nov, doctor thought it was due to the endometrioisis. She went for follow up this past Thursday and the CA125 shows increased levels from last month. The doctor is now worried. Not sure if the fact that both tests were around the last days of period cycle along with endometriosis have anything to do with it. Last month the ultrasound did not show anything. Today my wife is going through the CT scan with Barium. Have surgery scheduled for Friday if it is endometriosis related. I hope it is.

     

    Loved the guy's post because we are supposed to be the strong ones and it is strange how strong the women are. Real proud of my wife. Sometimes it is hard to express that. I have been very quite last 3 days and not sure if she is taking that as I don't care or knows that I am struggling with her situation and a hot mess due to it. I have this sinking feeling and glad that I found this avenue to post and share some of my thoughts and feelings.

     

    Pray for us.

    Dear ahusband

    Elevated CA125 and painful periods could be caused by a number of benign conditions. Pelvic, abdominal and even transvaginal ultrasound generally do not catch ovarian malignancy. CT scan does.

    I sincerely hope that your wife's test today turns negative for ovarian or any other type of cancer. It is a fairly rare disease in general population (BRCA1 / 2 negative women).

    Stay strong for her.

    Best of luck to you both.

     

  • risha1901
    risha1901 Member Posts: 1
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    Hi

    Hi

    My radiology reports says that I have an endometriotic cysts of 7.9 * 6.5 cm in right ovary. I was suggested to go for CA125 test. My CA125 report shows the Tumor marker 46.8 which according to the normal range mentioend in the report (2.0 - 35.0) is high.

    Does it conclude that I have a cancer??

    Many Thanks

    Risha

  • mopar
    mopar Member Posts: 1,972 Member
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    risha1901 said:

    Hi

    Hi

    My radiology reports says that I have an endometriotic cysts of 7.9 * 6.5 cm in right ovary. I was suggested to go for CA125 test. My CA125 report shows the Tumor marker 46.8 which according to the normal range mentioend in the report (2.0 - 35.0) is high.

    Does it conclude that I have a cancer??

    Many Thanks

    Risha

    NOT AT ALL, RISHA

    No conclusion until biopsy/surgery/pathology.  Endometriosis and other conditions can elevate the CA125.  What is their next step?  Do you have a history of endometriosis?  Please keep us informed. 

    Sending ((HUGS)) and Prayers.

    Monika

     

  • shahvizay
    shahvizay Member Posts: 1
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    Hello
    Please do not borrow trouble, the ca125 is not a good marker to diagnose ovarian cancer. It can be elevated for anyone of the reasons you stated.this is not medical advice but yes it's possible your wife does not have cancer.
    It is not easy but take a breath and wait to hear from your dr.
    If the news is bad you will deal with whatever it is.
    Good luck
    Colleen

    CA 125 level

    Hi!

     My mother has just got CA125 test. Its 273! Is it supposed to ovarian cancer for sure? She has endometriosis. Fibrinoids in the uterus(enlarged). She has diabetes, hypertension.. Last measured blood pressure was 150/90. Please suggest Something good we are tensed.I hope this will help us for some extent.

  • amfietobias
    amfietobias Member Posts: 1
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    I have 39 H result in CA 125.

    I have 39 H result in CA 125.. i had endometrial cyst measuring 3.5cm x 3.5 x 2.5 cm on my left ovary. Does this mean i have ovarian cancer? 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,444 Member
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    Dear amfietobias, the doctors

    Dear amfietobias, the doctors will need to do testing to see what you really do have, and I hope it is not some cancer.  If it is, please be sure to work with a gynecologic oncologist as they specialize in gyn cancers.  As for this thread, sadly it is an older post and some of the beautiful ladies are no longer with us.  

    Please let us know when they complete the testing.  I am hoping it is nothing.

  • star1310
    star1310 Member Posts: 1
    edited September 2018 #20
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    Endometriosis

    Hi all, I am 27 years old. Unmarried n never been pregnant. I was told that I have 3.6cmx4cm endometrial cyst on right ovary. I did CA 125 test 6 days before my periods and it was 58.3. two months later I did CA125 test just one day before periods and it was 182.8. what could this mean?.

     

    Please help

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
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    star1310~References that may help explain "Endometriosis" 4U

    Dear “star1310”

    Although I don’t know anything about “Endometriosis”, I have looked up some references that may be helpful.  I wouldn’t begin to know why your CA-125 is elevated, but when it is this high, it certainly needs to be explained.  Normally our CA-125 can range up to 35 and be considered “normal”, but there are other times when it is elevated because of infection, etc.  However, a gynecological oncologist is the best person to take your case and find out what your problem is.  I did look up the equivalent in inches for the two measurements you gave us.

     They are as follows:  3.6 cm = 1.41732283 inches…4 cm = 1.57480315 inches.

    Anytime we have something “inside” that isn’t supposed to be there, it is a cause for concern.  So hopefully you will find a well-qualified doctor who is thoroughly familiar with Endometriosis.  While I have given references that include the possibility of cancer, please don’t assume that whatever the problem is starts with a “big C”.  I do know that there are others on this forum who have this problem, and hopefully some will come forward to help you.  Moreover, the next time you write, why not a “new topic forum” on this link start?  The one you are using doesn’t have a lot of active participants.

    Hoping you will soon find answers to all your questions, and that things can be resolved quickly.

    Loretta

    Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

    ___________________________________________________________ 

    1.     https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

    “Overview - Endometriosis

    Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.

    With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.

    Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available…”

    _______________________________________________________________________ 

    2.     https://www.medicinenet.com/endometriosis/article.htm

    “…What is endometriosis?

    Endometriosis is the abnormal growth of endometrial tissue similar to that which lines the interior of the uterus, but in a location outside of the uterus. Endometrial tissue is shed each month during menstruation. Areas of endometrial tissue found in ectopic locations are called endometrial implants. These lesions are most commonly found on the ovaries, the Fallopian tubes, the surface of the uterus, the bowel, and on the membrane lining of the pelvic cavity (i.e. the peritoneum). They are less commonly found to involve the vagina, cervix, and bladder. Rarely, endometriosis can occur outside the pelvis. Endometriosis has been reported in the liver, brain, lung, and old surgical scars. Endometrial implants, while they may become problematic, are usually benign (i.e. non-cancerous)…”

    __________________________________________________ 

    3.     https://www.cancer.gov/news-events/cancer-currents-blog/2018/liquid-biopsy-screening-test-endometrial-ovarian

    “Study Shows Experimental Screening Test Can Detect Endometrial and Ovarian Cancers

    May 2, 2018, by NCI Staff

    PapSEEK detects genetic alterations in DNA that ovarian and endometrial tumors have shed into the uterus, cervix, and blood (plasma).

    Credit: Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University

     Researchers have shown that an experimental screening test can detect some endometrial and ovarian cancers at their early, more treatable stages. The test, called PapSEEK, is a type of liquid biopsy that identifies cancer-related alterations in DNA obtained from fluids collected during a routine Pap test. 

     In the NCI-funded study, which used Pap test samples from women already diagnosed with cancer, PapSEEK correctly identified most women with endometrial cancer and one-third of women with ovarian cancer. The test's ability to accurately identify cancer (its sensitivity) improved when the researchers also tested DNA collected from blood and other tissues.

     Sudhir Srivastava, Ph.D., M.P.H., of NCI's Division of Cancer Prevention, called the findings "a good start" for developing an effective screening test for early-stage endometrial and ovarian cancer. "This lays the foundation for future studies," added Dr. Srivastava, who was not involved in the study.

     The retrospective study was published March 21 in Science Translational Medicine. Additional prospective studies are needed to determine whether PapSEEK can correctly identify women with cancer who have not yet been diagnosed, the investigators noted…”

    _______________________________________________________________________ 

    4.    https://www.cancer.gov/types/uterine/patient/endometrial-treatment-pdq

     

    “Endometrial Cancer Treatment (PDQ®)–Patient Version

    Sections

    General Information About Endometrial Cancer

    Key Points

    • Endometrial cancer is a disease in which malignant (cancer) cells form in the tissues of the endometrium.
    • Obesity and having metabolic syndrome may increase the risk of endometrial cancer.
    • Taking tamoxifen for breast cancer or taking estrogen alone (without progesterone) can increase the risk of endometrial cancer.
    • Signs and symptoms of endometrial cancer include unusual vaginal bleeding or pain in the pelvis.
    • Tests that examine the endometrium are used to detect (find) and diagnose endometrial cancer.
    • Certain factors affect prognosis (chance of recovery) and treatment options.

    Endometrial cancer is a disease in which malignant (cancer) cells form in the tissues of the endometrium.

    The endometrium is the lining of the uterus, a hollow, muscular organ in a woman’s pelvis. The uterus is where a fetus grows. In most nonpregnant women, the uterus is about 3 inches long. The lower, narrow end of the uterus is the cervix, which leads to the vagina…”

    ________________________________End of references_________________________________