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CA 125 elevated due to endometriosis? - how much?

HusbandOfAnAngel
Posts: 4
Joined: Sep 2012

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

Cafewoman53's picture
Cafewoman53
Posts: 735
Joined: Jul 2010

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
Posts: 4
Joined: Sep 2012

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's picture
Glad to be done
Posts: 558
Joined: Jul 2012

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

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

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
Posts: 4
Joined: Sep 2012

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.

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

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's picture
lovesanimals
Posts: 1266
Joined: Sep 2011

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

shahvizay
Posts: 1
Joined: Feb 2014

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.

mopar
Posts: 1950
Joined: May 2003

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
Posts: 4
Joined: Sep 2012

Many thanks for Everyone for the support and encouragement. You are wonderful people.

poopergirl14052's picture
poopergirl14052
Posts: 1161
Joined: Nov 2010

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
Posts: 3
Joined: Nov 2012

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
Posts: 1
Joined: Jan 2013

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's picture
Alexandra
Posts: 1246
Joined: Jul 2012

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
Posts: 1
Joined: Feb 2013

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
Posts: 1950
Joined: May 2003

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

 

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