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BIG CA125 Number

cindy333
Posts: 9
Joined: Dec 2013

I posted my story a couple of days ago. And just when I started to get my feet underneath me thinking I could do this (with the help of you all) my general doc called me last night to give me my blood work info that finally came back.  My CA 125 was 4550.  I see my OBGYN/OCON tomorrow morning to go over the plan for I assume surgery and whatever else.  I had the hope that without a biopsy there was no cancer, but this seems to tell me something different.  I have been on the internet a lot this last couple of weeks since i was first told about my large tumor, but I don't think I have see any CA 125 number that big on anyones story.  How unuusual is this?  And does the larger the number mean more of the cancer?

Cindy

scatsm's picture
scatsm
Posts: 249
Joined: Apr 2013

What a horrible New Year's Eve call! It is frightening and overwhelming to hear this news. You will get through this and come out on the other side as so many of us have done.

My CA125 was 2200 at its highest. I don't think the number matters per se as much as what it does after surgery and chemo. Mine went up after the first chemp (normal as the tumors are dying and expressing whatever the ca125 is sensitive to), then went down quickly after that for 3 more chemos to about 550. After the surgery it went to around 20. I then had 4 more chemos and during those it went to 4 and stayed that way for a year or so. I had an extensive tumor load, so the chemo came first to shrink the tumors. Usually, surgery comes first. My actual diagnosis came weeks after I had been told I had stage 3c ovca to confirm what the gyn/onc already told me.

As frightening as this is, please know that ovca is usually very responsive to first line chemo. Most of us had carbo/taxol. It sucks, but it varies how much. Some women breeze through it, others not so much, but hair loss is part of the deal. Use this board for questions and support. Everyone here has been there, done that. Your questions will always be answered. There is a lot of love and compassion here.

So, so sorry that you had to hear this news, but you are not alone. We will walk with you!

All the best,

Susan

 

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

Was it really necessary to call you on New Years Eve to tell you this news?    It seems as thogh if you have an appointment tomorrow they could have told you then. 

My CA level was in the high 200's before surgery and was down to 19 the day I started chemo.  I am two years out and it is at 5.8.      Being told that info is very scary...   I had a big ole pity party for about 48 hours afterwards and then I pulled up my big girl panties and fought my ass off as I am sure you will do the same.  Take the time to process the information and then go into fighting mode.  A good fighting attitude is what you will need.

They will be throwing alot of info at you over the next few weeks.  Things such as I P (intraperoteneal) port, chest port, etc.  Ports come highly recommended by most oncologists but will leave the choice up to you.  I had the IP port put in.  That was used to deliver chemo directly to my abdomen.  She recommended the chest port but I was against it until after my first treatment.  Between the first and 2nd I went and had it put in and I was soooo glad I did.  I did 6 rounds of cisplatian/taxol.  It kicked the cancer's ass and for that I am greatful.

Things that helped me:

  When you go to appointments take someone with you.  I was in a fog and only heard half of what the doc said.  It helps to have that second set of ears.  Bring paper and pen to write stuff down.  Any questions you have write them down.

A friend of mine told me about a website called care pages.  www.carepages.com   If you want you can go in and set up a free page that you can update daily, weekly whatever.  WE found this very helpful because  everyone could join the site (from your invite) and get updates.  It cut way down on the phone calls having to be made or answered...

Any questions just ask....  We are here for you my friend.  We got your back.  We will walk every step of this journey with you...

Eileen

 

 

 

Alexandra's picture
Alexandra
Posts: 1243
Joined: Jul 2012

Every one of us on this board has been through the shock and surreal experience of having been told about cancer for the first time. I am very sorry that you have to be here under those circumstances. CA125 = 4550 is high, though I've heard of someone with 10,000. Mine was 1083 when diagnosed. The absolute number is meaningless, it's the trend (rate of increase when disease progresses or decrease when chemo is working) that matters. You have a large ovarian mass 21x11x11cm, but on the positive side you have not mentioned seeding to other organs or ascites, so there is still a chance that disease has not yet spread and is contained only to ovaries (stage 1) and is curable. Also the doctor has to confirm your primary, because peritoneal, uterine and ovarian cancers all could cause elevated CA125.

You best option is to get to an experienced GYN-ONC and get it all out. Usually all means uterus, both ovaries, fallopian tubes, appendix, omentum and any other organ where the surgeon sees cancer. Stage and grade will be confirmed by subsequent pathology and determine further treatment; usually 6-8 rounds of Taxol / Carboplatin chemo. Time is of the essence, because cancer metastasizes quickly. In my case it took 6 weeks between a 2mm nodule on 1 ovary to the full blown stage 3C ovarian cancer.

Whatever questions you might have, don't hesitate to ask; ladies on this board are very supportive, knowledgeable and caring.  

Happy New Year and big hugs,

Alexandra

seatown's picture
seatown
Posts: 223
Joined: Sep 2012

So sorry to hear about that CA-125 number. I reacted the same as you--I nearly dropped the phone when the doctor called me with the first number, tho mine was "only" about 2,800. As Alexandra said, there certainly have been higher counts. And also as Alexandra said, your oncologist will no doubt tell you what's important is not the initial number, but how it changes with treatment. With carbo/taxol, my CA-125 went steadily downward until it got to the normal range last summer.

FWIW, I went straight to chemo. I don't recall being given a reason, but I assumed it was because I'd already had a hysterectomy/oophorectomy. I assumed I didn't need a port because I'd had monthly IV infusions before my cancer diagnosis, but after the first chemo I had the port put in & and am SO glad I did. And yes, with carbo/taxol your hair goes. After 18 months of chemo, I'm finally getting some more hair. I change my photo every time I have a little more! 

Another site where you can keep family & friends updated is www.CaringBridge.org. It's free, but this time of year they do a little too much asking for donations for my tastes. But nobody has to donate. My family & friends have told me they appreciate reading my updates (I think in part because then they don't always have to call & ask how things are). Can't recall if I told you before, but my site there is www.CaringBridge.org/visit/CaroleSeaton. They've had some trouble with trying to update the site & sometimes the pages are slow to load, but if you're patient all will work out. 

I'm sure your doctors will have encouraging news for you tomorrow.  I too see the doc tomorrow, to get the results of yesterday's CT scan. Here's hoping for good news for us all! Please let us know how things go for you.  Best of luck!

lovesanimals's picture
lovesanimals
Posts: 1262
Joined: Sep 2011

We can certainly relate to how you must be feeling right now.  There have been plenty of women with CA 125 close or above 10,000 and to answer your question, a higher CA 125 does not mean more cancer.  I agree with Eileen about taking a trusted friend or relative with you to your doctor appointment tomorrow.  Before you go, write down any questions that you have and take paper and pen with you.  Have the other person take notes at the doctor's office.  A second set of eyes and ears is very helpful, especially when you know that you aren't thinking clearly.  Please know that a lot of internet information is outdated.  Always remember that you are a statistic of one.  Please let us know the outcome of your appointment and know that we are here for you.

Hugs,

Kelly

wholfmeister's picture
wholfmeister
Posts: 260
Joined: Dec 2012

I will be holding you up in prayer tomorrow.  It is, indeed, scary, but as all my friends have said, we've been where you are.  You are not alone.  One step, one day at a time.  

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

I was 6000 ...now after five years and almost constant chemo it is 20 . Hang in there...stay strong...val

kikz's picture
kikz
Posts: 1275
Joined: Jun 2010

  My first CA 125 was 6900 and increased to over  9000 before the first chemo.  It was 800 after three rounds of chemo and 13 after surgery.  I've seen all kinds of numbers on this board, some very low and still diagnosed IIIc. 

This is a difficult time for you.  There is so much to take in and most of it frightening.  I am so glad you found this board.  The women here are kind, informed, supportive and can make a big difference as you continue this journey.

I wish the very best for you.  Please know we are here.  The day I found this board I wept as I typed because I was feeling so alone and scared.  That was over 3 1/2 years ago and I have found comfort here many times.  I have vented feelings of sorrow, fear, anger and despair.  I have also shared the good times, the happy times, the funny times.  I also hope that I have helped others as I have been helped.

Karen    

 

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