Ovarian Cancer Support Group

Ca125 can be a good marker for ovarian cancer in many cases.. and a rise and fall in numbers can indicate whether the cancer is progressing or regressing... however, not in all women. Some women have high CA125 with no cancer and others can have no rise and still have OC.. this is why an MRI scan is needed. Even if the scan shows a tumour it still may not be OC and could be a benign condition. It isn't until a sample of the tumour is tested that a diagnosis of ovarian cancer can be made.

There are other conditions that can cause rises in CA125, though I am not sure what they are. I hope this is helpful to you. Ovarian cancer is extremely rare and I will be hoping loads that this turns out to be something easy to deal with.. Please let us know how you get on. Best wishes to you.. Inka xxx

Thank You for your replay .
I started having pain in my hip .
This waiting for an MRI and more tests is making me crazy .
Can I ask what was the level of your CA 125 before you started your treatment ?
I will let you know if it is OC .
Thank you Halli ( Inka )

Hi Maxine, I think Inka is traveling these days so that's why she hasn't gotten back to you yet. I know that waiting is hard - probably harder than dealing with the realities. My CA 125 was 1475 before I started treatment but some women have far higher numbers. I hope you get your answers soon. This is a good site for help with ovarian cancer questions. Best wishes, Janet

Hi Janet ,
Thank you for your reply . My CA125 went from 1100 to 2800 in the last 3 weeks . I am going under the knife this Tuesday - they don't know if they will remove only the overies or more !! Can I ask what was your treatment and how are you doing today ?
Hope to hear from you soon.
Maxine

Hi Maxine, I had very extensive debulking surgery because I had tumors throughout my abdominal area - even on my diaphram. I had a total hysterectomy, wedge of colon removed, ablation of my liver, my omentum removed, my spleen removed and other visible signs of tumor throughout the abdominal cavity removed. Actually when I signed the surgery consent right before going under the knife, I was somewhat surprised by all the things on it. I did have what's called "optimal debulking" which means they got all visible signs of cancer. I would imagine they will do the same for you.

I had a rare and very serious bleeding reaction after surgery that significantly impacted my recovery. I do want to emphasize "rare" and don't want you to worry. Actually the surgical permission mentions the things that could go wrong. I just didn't read it very thoroughly when I signed it.

Generally women receive chemo consisting of carboplatin and taxol about three weeks after surgery. There are some variations based on the doctor's preferences. Most doctors individualize the woman's treatment based on her individual needs. I received only carboplatin because I was so sick from the complications. Usually there are six rounds of chemo depending on how one does. I did go into remission. I was actually diagnosed two years ago today. I had Stage IIIC disease - they do the staging based on the surgical findings. IIIC is fairly advanced but still treatable. I had a 16 month remission and am now receiving chemo again and appear to be going into remission again. My CA 125 is currently 3 with one more treatment to go (I just had chemo yesterday). Many women, however, go into a longer remission. My quality of life is very good and I am still working fulltime. I just take time off for chemo and work shortened hours the week afterwards. During my remission I felt greaat.

Do ask your doctor any questions that you may have. Over the past two years I've become much more proactive about asking questions. At first I was afraid that any answers I got would scare me but I think the best news is that ovarian cancer, while a difficult diagnosis, is treatable and that we can live good and normal lives with it.

You will be especially in my prayers this week. Keep in touch and let us know how it goes. Best wishes and many hugs, Janet

Dear Janet ,
Thank you so much for your reply . It was full of information . I know that I am not alone , that there are other women that were or are in the same boat , as I am .
I will let you know what they " did "to next week . Thank you for your prayers . I like that your CA 125 is @ 3 . Best wishes to you .

MAXINE

Hi, Maxine.. I have been away and am only just catching up with things here.. Everything happens so quickly doesn't it.. hardly time to get to grips with it all and extremely stressful and worrying, I know. Tomorrow you will having your op and I wish you the very best out come from it. From what you have written all is being done exactly as it should be.. samples will be taken of any growths and once these are are processed a clearer diagnosis can be made.

If this is OC then you should have a substantial drop in the CA125 after the surgery and a course of chemo.. as Janet said, probably carboplatin or cisplatin and possibly with taxol or gemcitabine. I had carboplatin on it's own the first time around and was in remission for over seven years. My CA125 was about 400 before the op and went down to single figures after it.


Wishing you all the best for tomorrow with a huge hug.. Inka xxx

Hi Inka !
It is so nice that you went away ...I hope I will be able to go away for a few days soon ...
Thank you for all the info about your condition .
Thank you for the best wishes .
I will let you know what they "did" to me as soon as I can . I don't know how long I have to stay in the hospital .
MaxineL

Hi,just had my surgery this past Tuesday - Nov.17th. - total hysterectomy +my omentum removed. Yes I had Overian Cancer - don't know the stage yet.
I think it is 3C. I am starting my chemo consisting of carboplatin and taxol on Dec.03 .
I am at home since Thursday the 20th. I feel so empty and lost . I hope this will change in the next few days .
Maxine

Hi Maxine, I know that this is scary news but please also know that we do come to grips with the diagnosis of ovarian cancer and do lead good lives despite cancer. Being part of this group has really given me support and hope. Many of us are living good and almost normal lives despite ovarian cancer. There are some who get a very long remission even with IIIC disease after having chemo. I had a decent (though I wish it were longer) remission after having carbo/taxol. Now I'm back in chemo - my last treatment is December 4 - and it looks as though I'm going back in remission again. Keep strong and fight with all you've got - things will get better. You are not alone. Many hugs and much care, Janet