My Ovacome

Simply terrified

Hi all

It's December 23 and I should be relishing in the joys of my kids but I can't. I have been having lower back pain and cramping with sharp pains for the last several weeks, close to eight now. I went to the ER one month ago and they did a transvaginal ultrasound and said it was fine, no solid mass but a tiny fluid filled sac. Pain has not subsided and I feel full and icky. I went to my family doctor. He did a pelvic exam and said it appeared fine. Pain and discomfort still did not pass. I went to a gastroenterologist and he will give me a colonoscopy and a gastroscope in a few months. Last stop was yesterday to see my internist. He wanted me to get the ca125 done. I had it done once before six months ago and it was normal. Well the results came in and I have access to them online and they are a 73!!!

I'm so scared. I have two small children and I am 39 years old. I can't stop crying. I don't understand why it could read that high when they told me my scan was fine a month ago.

Sorry for the long lost. Just really scared.

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Hello Nadia. Reading your post at this time of the night means I am not on my own to be terrified. You had 2 ca125? Does that mean you’ve been diagnosed and in remission. I don’t fully understand.

I had tubes, ovaries removed because I had a cyst on one of my ovaries last March. It turned out to be a borderline serous ovarian tumour . I was assured all was gone. A ct scan in October found a 3 cms nodule in my pelvic area. I am having that removed in January. I have felt ill since September but as I have other issues (IBS, Colitis, hyper thyroid just discovered), I don’t really know what’s wrong with me. My ca125 is only 8. They also found an enlarged bile duct and the gastro is sending me for an MRI scan on January 12th. The fact that is so quick panics me but at least all will be revealed then. I am due to go to the alps with my daughter, partner and grand-children for new year and I don’t want to go. Well I do of course but frightened to be ill and spoiling it for them. I’ve lost weight, want to wee often and feeling quite nauseous. I’ve started aching everywhere too. And so tired.

I guess I am not being very helpful. But talking to someone in the middle of the night is helpful. You are not on your own. Best wishes

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Welcome to this site. I hope you'll find it a source of friendship and wise words.

You don't say which country you're in and that may mean what I say isn't quite right, but, you've done yourself a favour with getting your CA125 done and getting a result which means your symptoms need to be looked at more closely, and quickly. Possibly with a CT/MRI scan.

There can be different reasons for a rise in it, but if yours was normal 6 months ago, whatever is going on is fairly recent.

Not knowing what is going on and being in pain is scary, but you've got a way forward now. (I'm sure this time of year doesn't help either with all this having to be jolly stuff, even if we don't feel like it).

Easier said than done, but try not to get upset unless and until you know you've got something to be upset about.

Having two little ones will be a great diversion over the days ahead. Enjoy them!

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Sorry to read you are in a kind of no mans land ( I should write womens...) of not knowing where you, what's causing these pains etc when you seem to be doing all the right things about checking but not getting any proper answers or solutions.

Hope someone helps you find a pathway through to what's really going on but don't be scared by the CA 125 reading... remember it's only an indicator and can be the result of other issues.

You will read of women with readings in the 1000's ( like me, but happy to be in the 200's now) . Ultimately it is all about the symptoms you present not the numbers.

The toughest part for you is your age and having young children, you don't say if you have a partner or family to help and support you

Well we ladies are here to advise and support you , take a deep breath, enjoy Christmas with your kids, keep an on going diary of your health issues and keep asking those questions,

Janet x🌈

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Hi Nadine,

Waiting on further test results is one of the hardest things and Im so sorry that you're going through this at this time of year...

There is some really good information here about the ca125 test, as you'll see from it, ca125 can also be raised (especially in younger women) due to menstruation, endometriosis and/or ovarian cysts...

targetovariancancer.org.uk/...

Having the raised ca125 will prompt further tests and more thorough investigation and I really truly hope that you won't get the result you fear... the thing is though, that whatever is going on is happening already and knowing abiut it , getting diagnosis and treatment as early as possible is really the best thing. I do understand it will not feel that way.

Do please relish in the joys of your children or at least allow yourself to be distracted by them a little.... be kind to yourself and perhaps simplify things a little to take the strain off. Give yourself some time outs to have a little cry if needed, nap, lean on friends or family, be outside or find some quiet.... but please try to stay in the present.

Youve found a great forum of people here and regardless of the time or date, someone is around.

Will be thinking of you & I wish you hope & strength, Sx

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Hi Nadia

if you have any inflammation in the pelvic area your CA125 will go up. It’s not just an indicatior for ovarian cancer. It could be endometriosis, a cyst, an infection, anything Please take some deep breathes and try to relax. The most important thing for the festive period is to get your pain and discomfort under control and then get more investigations done in the New Year. Nothing terrible is going to happen. Sending hugs 🤗

Marian xxx

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Thank you all so very much for the kind words and encouragement. I am from

Canada. I do have a husband who is great but also very scared.

The reason I had a ca125 test six months ago is I had a ct scan of some other organs and my internist suggested I have it done as there was some small fluid filled cysts on my ovary - not sure which one. So I had a trasvaginal ultrasound and a referral to a gynaecologist who said it was fine and normal and sent me on my way. Now six months later I have been having lower back pain and cramping and digestive issues for eight weeks. Had another ca125 and it is at 73!

I did take the test on the last day of my period where I'm had some bleeding. I'm just really scared. I have tried to do all I could and go to the doctors but they kept sending me home. Thanks for all your responses. It is very kind and helpful at this time.

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Thank you all so very much for the kind words and encouragement. I am from

Canada. I do have a husband who is great but also very scared.

The reason I had a ca125 test six months ago is I had a ct scan of some other organs and my internist suggested I have it done as there was some small fluid filled cysts on my ovary - not sure which one. So I had a trasvaginal ultrasound and a referral to a gynaecologist who said it was fine and normal and sent me on my way. Now six months later I have been having lower back pain and cramping and digestive issues for eight weeks. Had another ca125 and it is at 73!

I did take the test on the last day of my period where I'm had some bleeding. I'm just really scared. I have tried to do all I could and go to the doctors but they kept sending me home. Thanks for all your responses. It is very kind and helpful at this time.

Nadia

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Hi Nadia, I'm sorry that got are going through some scary pains and nothing worse than no one can find really what's wrong. I know you said you went to your gynocologist but I would recommend finding an gynecological oncologist. They have more knowledge and know what they are looking for. A regular gynocologist does not have that extra training and I believe it makes them more dismissive. I found this to be all too true in my case. Stay vigilant because no one knows your body better than you! I hope that you will be able to get some answers soon!

Stay strong, stay positive! Tracy

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Hi! I have the same reaction last September. I felt so hopeless knowing my CA 125 is elevated. My transvaginal ultrasound shows endometrial hyperplasia. I still bleed but not as worried. I am reassured by my GYNAECOLOGIST that I might be under going some inflammation. I am still monitoring my bleed and hopefully will find the appropriate treatment soon:) Goodluck to us and hope things more clear:) Merry Christmas 🎄

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