My CA125 is inching up...

scatsm

I had my latest CA125 and it is 14.4. It has been inching up the last 3 times, from 4 then going to 5.1, 8.8 and now 14.4. I know this is still considered within normal range but in my in my mind I am having a recurrence and am full of fear. Has anyone had a rising CA125 without it being a recurrence? Is this the way it happens, slowly going higher? I don't see my gyn/onc for another month and I'm debating having another one done right before I see him. I had it done this week as part of my breast cancer f/u visits every 3 months. I wonder if anyone has had a fluctuating ca125, also wondering if it's worth it to have a ct scan. haven't had one since the end of treatment in March 2012. Ugh!

Susan

Cafewoman53

Susan

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

kikz

I'm so sorry for what you are going through.

It seems this disease rarely gives a moment's peace.  I am sure your doctor will have you take another test if you don't.   I wish I had some magic words that would ease your fears.  I sometimes think the unknown is the worst part of this disease.   

Karen

Alexandra

CA125

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

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.

kikz

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.

I too am grateful I was able to stay away from chemo

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

Karen

scatsm

kikz said:

I too am grateful I was able to stay away from chemo

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

Karen

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!

kikz

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!

It makes me happy

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

lovesanimals

kikz said:

It makes me happy

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

Dear Susan

I haven't been in your shoes in terms of a recurrence but feel that I can understand your fear and anxiety.  I agree with you that I would want to hold off chemo as long as possible, especially if I'm not experiencing any symptoms.  It feels like we can never relax but I hope you are able to get some sleep tonight.

Hugs,

Kelly

Lisa 00

small rise

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

scatsm

Thanks, Lisa!

It's nice to think that can happen...I'm so glad for you and hope your remission lasts and lasts.

I think I'll focus on that (instead of where my mind is going).

I am going to redo the ca125 prior to my gyn/onc appointment on Dec 5th. I will have a CT scan after I meet with him if the ca125 continues to go up....I guess til then it's xanax, denial and this board. I'm trying not to alarm my kids which means not talking about it. They will be devastated if this is a recurrence. I'm their only parent. They are 23 and almost 21, just starting their lives, so self absorbed yet vulnerable too. I want them to be able to establish themselves, but I also want them close. This is a hard time to be dealing with this disease (there is no good time). Empty nesting when you have ovarian is tough!

This is the safest place to vent. My sister is a great shoulder to cry on, but I know she worries too. So, thank you, teal sisters, for your shoulders! I met with my medical oncologist who looked at the ca125 and sighed, saying 'good luck'...ugh...that sure didn't help. Just finished my herceptin infusion and was crying in the chemo room thinking about what may be ahead for me.

childofthestars

Susan 
I just want you to

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

childofthestars said:

Susan 
I just want you to

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 

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

poopergirl14052

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

Ask for a re-do

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

 

Pamela B

Hi Susan

So sorry for the anxiety you are experiencing.  You are in my thoughts and prayers daily.  It is a terrible disease but the women on this board make it a lot easier to handle.  I hope you never feel alone when you have this wonderful group of emphatic ladies in your corner.  Keep us posted

 

Pamela