My CA125 is inching up...

Everyone is different for me that is how I know something is going on . I would definely have it taken again but I'm sure it does fluctuate at times so don't assume that it is bad, if it doubles then it is time to worry.

Also if there is something you will have caught it early so easier to treat. Good Luck !

Colleen

Hi Susan,

I was asking myself the same question while my CA125 was slowly going from 4 to 5 to 6 over several months. The answer was a definite NO, it's not a recurrence until there is a significant upwards trend. And sure enough, my CA125 in August was 6, in September 60, in early October 82. Remember the old "Crocodile Dundee" movie: That's not a knife. THAT's a knife. (Pronounced "knyfe")

I had CT done in August and though it showed early radiological recurrence, it didn't convince the ONC and I had to get it re-done a month later. The second CT was conclusive of the peritoneal recurrence.

Susan, if you are not experiencing any symptoms, I would sit tight for another month, re-do CA125 the day before you see your GYN/ONC, and depending on the result decide on a CT scan. As a rule CA125 goes up several months before CT could register any changes. According to my ONC in all her years of practice she only saw one exception to this rule.

I know how frustrating and scary the wait is. I sincerely hope that it's a fluke and you will not have a recurrence.

Hugs,

Alexandra

pattysoo said:

The slow rise

As others have said, everyone is different. My numbers rose slowly for about a year. Even after I was up above 35, my oncologist didn't recommend a scan until there was a sudden sharp rise, or I became symptomatic. He believes that if you treat early, you just end up getting more treatments. At first I was pretty miserable, but after awhile, I learned to forget about it (mostly) and enjoy my life. We did try a couple of different hormone blockers to see if my cancer could be controlled that way. After a year+ that sharp rise occured and a scan was performed. I went back on treatment via a clinical trial.

This was my first recurrence and I was so disappointed and fearful when my numbers went up. In retrospect, I am really, really, grateful for the extra year without chemo. I sure hope I get another remission.

for 13.months actually.  When I began having symptoms my onc determined it was time.  I hope you get remission soon Patty.

Karen

scatsm said:

thanks for your comments..

I've put in a call to my gyn/onc to see whether or not he'd like to see me sooner than late November. His nurse practitioner said that I probably could use a scan and I'll hear back tomorrow I'm sure. Your responses reminded me that recurrences aren't treated right away...and that the longer I can go without more chemo, the better. I'm feeling very down tonight. Your thoughtful comments help me not to feel so alone. This disease SUCKS!

to think I may have even a little part in helping you feel less alone.  It is hard to burden those around us with the continuous burden of this disease.   It's always something.  The highs and lows are exhausting.  Most of the people in my life want to hear me respond, "I'm fine or I'm ok."  I usually don't have the heart to say what's really on my mind.  

That's why this board is so special.  It's one of the few places where I feel unconditional love.

You are in my thoughts and prayers tonight Susan.

Karen

Susan,

I wanted to let you know that I went through that small, but obviously steady rise of ca125 thing.  I was getting 3 month follow ups and the number was doing something like 7, then 10, then 12, then 14, then it went to 7.  So far, I've had no recurrence.  So, those fluctuations do happen!  Or maybe I went to a different lab?  I can't remember.  Obviously, I just try and not think about it! 

Lisa

Susan 

I just want you to know that I am thinking of you and truly understand your 'rising panic' but pleeeeeeaseee try & take a deeeeep breath & keep as calm as you can. My children are the same ages as yours and I so agree that whilst they are starting out on their life journeys they are still our babies & it's just toooo painful & upsetting to imagine them having to deal with another dx but they will, our children are much stronger than we give them credit for. I am sure they will be there for you as we all are here on this board (also the only place I feel I can truly relay my fears!!)

big hugs

Michelle xxx 

scatsm said:

Dear Michelle,

So glad to hear you are doing well post surgery and especially that you don't need any further treatment for the breast cancer.

You are so kind to respond to me from the hospital! That means so much...

I am calming down a bit and trying to remember that I have no control, but I can try not to ruin the next 6 weeks with worry. Sometimes it is not easy to do. I appreciate your perspective on the our young adult kids. I am grateful that they are as old as they are...

Hope to hear that you've gotten home soon!

Susan

for your Ca-125 in a few weeks. Anything can affect these numbers. Stay calm and stay strong...Val