Trying not to freak out

[AnotherNiceGirl]

I went to my OB/GYN 6 weeks ago for a few symptoms I was having. I was bloated all the time with a full, pregnant feeling. Also indigestion and some abdominal pain. I looked up the symptoms online and ovarian cancer jumped out at me. The doctor said I was pretty young (35), and that it probably was IBS or something. I asked him to rule out ovarian cancer anyway, so he oredered a CA-125.

He called me himself a few days later (which made me nervous in itself!) and said that my levels were on the high side of normal and ordered a repeat in 6 weeks. So, now it is 6 weeks later and he called me this morning and said that my levels have gone up slightly and that I should schedule an ultrasound to check my ovaries.

All this time he has been telling me not to worry about it, he just doesn't want to "miss anything." But, I have to admit that I'm kind of worried about it. This lab's normal value is < 21. My first value was 22, and my latest value is now 33. My OB said that cancers are usually in the 1,000s. I tried looking online to verify this, but I can't find anything. I did see that if you have an identified mass, a value over 65 indicates a malignancy in 90% of cases.

So, my question is this: is CA-125 usually in the 1,000s with diagnosed ovarian cancer? Are my values actually pretty low? Should I stop worrying as my doctor suggests?

Oh, I just saw a post asking for more information in posts. My name is Nicole, I just turned 36. I live in Texas and have given birth to 4 girls, aged 12, 10, 7 and 2. No other illnesses, and I'm on no medication. I'm 5'2" and have been 107 lbs. since #1 was born. About 6 months ago I jumped up to 116 lbs. Not sure that that means anything, but I thought I'd throw it in there. I've never had such a weight change ever. My belly is always bloated. Just getting used to it.

Thanks for any help!

[PinkTissue]

I hope that your test would turn out well. I know coming to this board and reading about OVCA is scary too....but you are doing the right thing to be so pro-active. Take care and I wish that you would have a clean bill of health!

[crecco]

Please try not to freak out just yet. The other girls are right, seek out a gyn/onc. And there are other tests that will help to determine just what is going on. the CA test is not acurate for many women and any more, age seems to play no part in it.
Not to scare you, but do not just let this go. Many of the women here were treated for a variety of other things before it was discovered that they had ovarian cancer, and IBS is one of the main ones.
  I wish you luck and that you will recieve a clean bill of health. Do not aplogize for being scared!
   Chris

[AnotherNiceGirl]

Oh, Cindy, thank you so much for posting. Your post is very encouraging! My OB did do an internal exam 6 weeks ago. He did not go through the rectum, but he did a vaginal exam (one hand in, one hand on abdomen). He said that my ovaries felt "good." LOL! I'm pretty sure he meant "normal." He says that he is not worried about it, but he keeps ordering more things!

My skimpy number of 33 looks like nothing next to your number! I read that benign cysts can cause a rise in CA125 values, as well. I will take that or the gallstones, please!

But for sure I will take your advice, and if anything shows up on the ultrasound, I will ask for a referral to a gyn oncologist.

I thank you all for wishing the best for me. I will feel horrible if I'm given a clean bill of health, while many people here are diagnosed. I thought long about registering here because of that!  Your advice is great. I don't know where I would have gotten this info otherwise, from people with first hand knowledge. Thank you!

[Cindy809]

Hello...I'm sorry that you are going through this uncertain time.  You have come to the right place.  The ladies gave you excellent advice.  I have a few things I'd like to add.  Your number for your age is not unusual.  A woman that has been diagnosed with Ovarian Cancer has more likely a chance of a recurrence when her number goes up.  You are doing the right thing by ruling out ovca.  Has your doctor given you an internal exam through the rectum at the same time vaginally?  It is not very comfortable but necessary.  That is how my gyn found mine. I then had an ultrasound.  It showed something.  He then ordered a CT scan and a CA125 test and within 2 days a referal to a gyn onc.  My CA125 was 3500.  It is a good marker for me but not for everyone!Chances are you do not have cancer.  If your results from the scan comes back and  your gyn wants to do surgery to remove anything at that point I would do what Ronni suggested.  Consult a qualified gyn oncologist.  With this disease you need to get it right the first time with surgery.  That is very important.  Good luck and hopefully your tests will come back negative!  Keep us posted....Cindy

[AnotherNiceGirl]

Thank you, Ronni. I wouldn't have thought to ask for a transvaginal or complete ultrasound. Hopefully they will be prepared and will have the wand for that. I'm hoping that they see gallstones or something. What a thing to wish for!

You all take care as well. Thank you for taking the time to come to this board to help frightened strangers! Blessings to you all.

[vegas2cr]

Your OB may very well be a baby deliver and that fine for that..Ask them tomorrow to do a transvaginal and complete abdominal ultrasounds... Again you know your body.. I have 3 grown kids and 4 grandkids and trust me it is hard no matter what your age or status... Please take care and let us know what happens... Ronni

[AnotherNiceGirl]

Thanks you so much for the quick replies!

It scares me to think that my OB doesn't know so much about this. When he mentioned that I could have IBS, I told him that I didn't have the constipation/diarrhea associated with it. He said that I didn't have to in order to have IBS. I know that that isn't true, and it worried me a bit that maybe he's just a baby deliverer!

Congrats to you, Ronni, for proving your experts wrong! I see from your posts that the numbers could be all over the place no matter what stage you're in. I was so afraid that I would be in Marie's situation (above) and have cancer, but low numbers. I knew that my OB would have totally blown me off then, and I don't know if I would have had the courage to go somewhere else.

Dawnlyn, I see that you also gained some weight. I know that cancer (or any illness) will cause you to lose weight, so my weight gain confused me a bit. Of course, I have visions of a 9 lb. tumor in my belly!

My ultrasound is tomorrow. My OB didn't mention if it will be transvaginal or not. You all are so nice, I will be sure to update. The idea of going to an oncologist sounds sensible, but that would mean that I'm actually worried about this! Kinda scary. I've got 4 kids to think about!

Thanks again so much for the well wishes. I will return!

[dawnlyn]

I agree with Ronni above please see a gyn/onc they are the experts.  I was staged 1A I gained 20 pounds and my CA-125 was never above 11.  As Ronni says listen to your body.

Take care and let us know how you are doing.

Dawnlyn

[marie3B]

Ronni is right.  This OB does not understand the CA125.  I never had high #s.  I had ovca for a long time before it was found and at that time my highest # was 10.  The day of surgery it was 66.  2 wks later it was 110.  Now my gyn/onc considers anything above 12 to be something to worry about for me.  The numbers are not meant to diagnose, just to track treatment and after care.  Marie

[vegas2cr]

CA 125 numbers being high or low mean NOTHING.  I am stage IV with metastis to my liver and was told I had 6 months... fooled them.. it is 18 months since diagnosis and I am doing well.. My highest CA 125 was 378.  I know women with stage 2 a  who have numbers that are in the 5000 range and I even knew someone whose number was 34000 and stage 3.... Your OB is uneducated... take yourself to a gynecological oncologist..not because I think you have cancer but they ae the experts...

When diagnosed 18 months ago... I had dropped weight to 107 pounds from my normal 118 and was bloated and with pain... Do NOT let anyone blow you off... You should have a transvaginal ultrasound... NOW... I am not trying to frighten you but so many doctors blow women off... Your age well ask the several women on here who are under 30..

You know your body... listen to it... and we will be here to listen to you... Ronni