I am not sure about symptoms.  I do have VERY frequent urination, but it has been that way all of my life.  I don't think I am bloated, but I do have what l thought was a spare tire around the middle.  The last 3 months I have started feeling sick/throwing up for about 3 days during my period.  It is just so hard for a woman.  The bowel changes, being tired, pains...we have them with so many things.   (Mainly during my period.) Of course, now it is hard for me to be objective about what my body is feeling. I am worried. Thanks so much for responding.  I have really needed to talk to someone.

Hope your doc is a gyno...Ca125 levels can be affected by infections in the body as well...good idea to have another one done...do you have any other issues, bloating, frequent urination,pain?? Keep us posted
Kimchi

I was diagnosed last week with a slightly above average CA-125 last week. I requested the test because I don't really know my family history, and I do worry some.  I am 42 years old and am premenopausal.  In looking back at a CA-125 from 2001 I was at 28.  This past one was 40.  Quite frankly my family doctor didn't know what to do.  She set up a pelvic CT which insurance denied. She then suggested an ultrasound.  I then started researching.  I didn't know beforehand all that can throw off this test. I decided to do a retest of the CA-125 next week because my first test was taken 2 days before my period started.  I know I sound like I am rambling. I guess I just needed to write it out to those who understand why I am so scared. I have been all over the internet looking for a site to give me some ideas.  Thank you all for being so giving and sharing your thoughts and concerns about what you are going through. You are amazing.

I'm from the UK and I had my 4mthly check up yesterday - CA125 was 19 in April (2mths after treatment finished for stage 3c) and I was told yesterday that it was 60 in July (last check up) My Consultant is not worried by this. She told me that CA125 is only one of indicators and that for someone like me where everything else is fine (in good health, no pain or swellings) there is no reason to worry about increase. Seemingly levels can go up and down all the time but if everything else is ok there is no need to get hung up about it at the moment.I know I worry about levels but I have been reassured by my Consultant and I am concentrating on keeping fit and eating healthily. All I can say is don't worry too much about the levels - it's not the be all and end all.

Hi there ladies... young and 'not so young'...  :-)
With the CA.125 being so high for your sister, littlesis, as she hasn't as yet had her bebalking operation, I don't think she should be worrying too much, as generally the chemo will shrink any tumour, and then after she has her operation, and more chemo, the CA.125 should drop down dramatically, and hopefully she should go into some sort of remission. According to my Oncol. we place too much importance on the numbers, and one person with a high CA.125 may not have as much cancer or problems, as another with a low count. I guess I am a good example of this theory. My present CA.125 is 4974...but I look a picture of health, feeling really well with no pain or discomfort, I am eating well, and going about my normal daily duties, but the CA.125 result from this week, tells us that something is going on. I'm presently on Topotecan, so according to my Oncol. he was expecting a higher score this time, so the almost 5000 isn't too much of a shock, although I didn't think it would go that high. Hopefully it will come down soon.
Just want to say, try not to stress about something that you don't have much control over. Stress is very bad for us with ovca.
Wishing you all the best, wherever you live, and hope that your treatments are doing good, and you are all feeling well.
Littlesis, please keep us posted on how your sister is doing after the chemo and operation. I wish her well.... Helmar.

the first time i had a CA 125 test, it came back at 26, then about two weeks later i had it done again and it came back at 35, so my doctor had blood drawn again last week and i have to find out what the results are tomm.  

My concern is that i'm 26 years old, i do have endometriosis, but i just don't understand why my CA 125 levels are jumping so high in such a short period of time, and my doctor is also a bit unsure as to why.

Can anyone please help either calm my nerves or please tell me if i'm just maybe worrying too much?
Also, for those of you who have been diagnosed with ovarian cancer, can you please be as specific as you can and tell me what you feel, meaning what are the symptoms that you felt that lead your doctors to believe you have ovarian cancer, and really anything else that would help me to see if my symptoms are all endometriosis related or something else.  I just recently had a 4cm hemorrhagic cyst, but they thought it was an endometrioma when they did the transvaginal ultrasound, so my doctor wanted to wait till my cycle was over to then see if it was still there *meaning it WAS an endometrioma* and if it was he was going to remove it, but all that showed on the TVU was just the "shell" of the cyst, the contents of it were no longer there, so they concluded that it was a hemorrhagic corpus luteum, but like i said, my doctor isn't sure just why my CA-125 levels have jumped up so high in a matter of a few weeks

Hello Caneschica,
     Forgive me Littlesis, I can't address your question as I am of the lucky 99% but I can address yours Caneschica.  Endo is one of the things, along with infection, that can raise the CA125 count.  A worldwide council of GYN/ONCs met in council last year to consider the results of a study conducted over 20 years involving CA125 results and concluded the new range for normal is anything under 65.  It was 35 in the past.  Try not to worry as all your readings are within normal and the changes are, most likely, due to the endo.  That hemorahgic cyst must have caused you a great deal of misery, I am glad it resolved on it's own.  Try not to worry Caneschica and Littlesis, I am certain some of our esteemed 1% club will be by to answer your questions.  Information is power, it will help you stay strong for your sister.  MV

Hello NYC lady,

I was diagnosed in June with OVCA 3c and additionally two cysts on my liver.  No symptoms until ascites bloated me up ( I have had five drains since then - one being for 11 litres) which turned out to be malignant.(I am in the UK by the way)
I didn't ask for many details - I feel better not knowing too much - however I saw my consultant last week who said my CA125 is now 3000 and was 6000 (I hadn't been told before as I didn't ask)
I have had three lots of chemo - the first was Taxol/Carboplatin which I had no problem with. The second time I had a bad reaction to Taxol and the treatment was stopped so I had to wait a further three weeks before my second treatment which was just Carboplatin as was the third.Then I delayed another week this month as I wanted to go to my sons wedding first ( all planned and organised by me as his fiancees family is in Japan so I was relieved and pleased it all went well !!)
The tumour(s)had not shrunk as was hoped but the consultant said that may be due to the treatments being delayed so I am scheduled for the next in three weeks and will be referred to the onc/gyn surgeon for an opinion re surgery.
The chemo seems to be slowing up the ascites hopefully and that makes me feel so much better - at least I can tie up my own shoes!
i don't think that your sister should worry too much - someone was posting to see if she had a record as her CA125 was over 50,000 at one time!

Hello - there is only one scale internationally (I'm in the UK too) but as you may have gathered people score very differently - like many women I was diagnosed as stage 3c/4 at the outset but had a CA125 of around 800 - this may be equivalent to your sister's much higher number and indeed I may have had more extensive disease than your sister.  The important fact they look for is how the CA125 changes as a result of treatment - hopefully going down dramatically during chemo and surgery, back into the 'normal' area.  Even 'normal' 0-35 is different for individual women.  Some disease free women have much higher figures.  I understand how frightened you must be and do hope you will gain a lot from joining the forum - there's a lot of experience and useful knowledge out there and we will do all we can to help.  Jenny

Thank you so much for all of your posts.  It helps having a place to come to and I'm slowly gaining a LOT of knowledge about this horrible disease.

Hi there! I'm from Barrie, Ontario - where abouts in Canada are you from? The CA125 test is so all over the place. I was 26yrs old when diagnosed last year and at stage 3c, I was only 46. I'm having my first recurrence (just started chemo again yesterday - Taxol/Carbo) and my CA125 never went above 18 - go figure. It's obviously not a reliable marker for me. I'm sure you'll see your sisters numbers drop dramatically from the chemo - maybe not at first, but eventually. How is she handling the chemo? It's really tough - I suffered from agonizing joint pain last time, and I'm literally just sitting here and waiting for it to start again. Got my morphine and zofran nearby! Good luck to her and you - please come back anytime. There are many women here who have been there and done it - we are glad to help.
Becky
p.s. I think your a great sister for caring so much.

I do not think that the actual number means anything other then out of range.  I know of women that have been dx'd with stage 3C Ovarian Cancer that have CA125's that range between normal (below 35) up to one woman who's number was over 70,000. It seems that for your sister her CA125 is an excellent indicator and will continually be monitored.

There will be many women that will come along and tell you their numbers, you will be surprised, the numbers are all over the place.

I was early staged and my CA125 was always within "normal" levels.