CSN Login
Members Online: 22

CA 125 up from 21 to 41

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Went for my 1 year 3 month. check up at MD Anderson. CA 125 is up from a steady 21 to 41. Doctor was concerned. Asked me what I wanted to do. Wait and do another CA 125 or have a CT scan to rule out any problems. It has been a year since my last CT scan. Pelvic exam was negative. I opted for the CT scan on May 17. To make matters worse this board was down for most of the night. I am afraid and nervous. Hubby is not worried. I have no symptoms. Energy is great. Appetite is huge. I feel wonderful except for the gnawing in my nervous stomach.

The nurse praticioner said that since my last CA 125 in Jan. MD Anderson changed their test and there have been several high results for patients. I am hoping and praying for NED results again. Hubby said I am worrying too much. I am anxious for the results on Wed from the CT Scan.

I think I am more worried than when I was first diagnosed. Silly I know.

You guys are an inspiration to me. I know I can do this whatever the results. More chemo, sure...bring it on. I want to have as much time as possible.

I think the waiting is the worst part.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Norma so sorry this issue has sprung up ... in springtime no less. I think when first diagnosed it was so out of left field and the whole journey ahead was a total unknown - unknown in not knowing the challenges of the journey ahead, extent of issues, and I basically felt fine -- sort of a "so what's the big deal here??" But when that first bump in the road hits later on we have way too much knowledge and insight. Hits pretty hard - it did for me as well. But at this point you only have a number, no evidence, so this may be just due to the testing changes since your last one. On the other hand, if anything does show up, you're finding it early and there are many options if you must go down that road. My first "recurrence" spontaneously resolved before I could get chemo underway. Had a new one later, but you really never know. Could be some minor infection or inflammation bumped number up.

Own every day and relish feeling good!!! Keep your days busy, a getaway would be great, any diversion you can find. Sending positive thoughts your way.
Big Cyber Hug to you, Annie

Kaleena's picture
Kaleena
Posts: 1079
Joined: Nov 2009

Hi Norma:

Sorry you are feeling anxious. The small rise could be anything from an infection or maybe just a wrong reading.

I know what you mean, though, about how you felt when you were first diagnosed and when you go to the doctors now. It's like when the phone rings and you see the caller ID and it is from your doctor's office, I like "freak" out sometimes, and it could be something so silly why they are calling.

Go with what your hubby says and just wait for the CT Scan results. If the doctor's were that concern about the rise in CA125, they wouldn't have given you a choice to wait to do another CA125 or have a CT Scan done.

Its that same thing when you're NED; we are always waiting for the "other shoe to drop" instead of just enjoying life. We let a number tell us how to feel. Before the doctor told you your CA125, you were feeling great and enjoying stuff and not worrying. So keep doing that, ok?

My best to you!

Kathy

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

You have no idea how conforting your words are to me. Being with those who are going through the same thing is a great help. Annie, you hit the nail on the head. When I was first diagnosed I didn't have as much fear as I do now. Waiting for the other shoe to drop is exactly what I was doing, Kathy. I just got up and can't sleep. Haunting the internet for some word that will tell me it will be ok. Next week I go to Houston on Monday and will have the tests done on Tue. Get the results from my onc/gyncologist Dr. Levenbach on Wed. So I will know then. Until then I have the weekend to enjoy. When first diagnosed my mantra was one day at a time. Then, with hearing the wonderful words you are NED I pushed the idea of cancer out of my head. I have to keep reminding myself that all I really have is today. Not to ruin it by worrying and missing the precious fact that I have today. I have no symptoms. I am in great health. So much to be thankful for. Especially the wonderful angels here. Thanks you so much for your words. They helped me a great deal.

susangr
Posts: 63
Joined: Oct 2010

Hoping too this is just a rise due to something other than a recurrence. I am at MDA and Dr. L is my doctor too. I go back
June 6th for another check up. I find it hard to put the worry out of my mind as the time approaches even though I know that it is what it is and my husband and I will deal with it the best we can whatever it is. Hoping for a positive outcome for you. Susan

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I know this sounds like denial. Well, ok it is denial. I am praying it is the change in CA 125 test they implemented in Feb. It is on the print out that there was a change in methodology.

If not I feel confident that I am in the best place there at MD Anderson. Dr. L is a good doctor. He doesn't paint a rosy picture. Just tells the facts good or bad. When I was diagnosed he was like that. Last visit in Jan. He said I was doing so well that I didn't have to come back for 4 mos instead of the usual 3. So here we are.

Best to you Susan. I hope your check up goes well. Thanks for writing. I am up late. Your note helped me greatly. I appreciate it.

Praying is helping. I am asking God to give me the peace I first had when diagnosed. It is in God's hands. I feel like I have been healed. I feel great. Except for the anxiety of wondering I feel better than I have in years. Ran up two flights of steps the other day and wasn't even breathing hard. Work 12 hours a day and still have plenty energy at the end of a day. Guess we never have a definite answer. It is always a matter of faith.

Good thing is I found a shuttle bus that will take me to Houston from Beaumont. The price is less than we would spend on gas and hubby can stay and run our business. So any trips I have to make for treatment, blood work, or chemo I can do on my own. I don't drive on the interstate. Another story for another day.

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

Hi Norma,
I am also a patient at MDA and just had my 4 month checkup. My CA 125 had doubled from the previous reading also. I really do think it is probably the new testing method they are using. Hang in there!

Laura

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Thank You!!! for writing and letting me know about your CA 125 at MDA. My gut tells me it is a change in the testing. 41 is still above average but if the new test is more sensitive it would seem to reason it shifts the whole thing upward slightly. Maybe I can give you a hug in person if we see each other for visits. Thanks so much!!!!

HellieC
Posts: 436
Joined: Nov 2010

Like everyone else , I am hoping that it is just the new test method that is causing the blip in the result. I am sure we all feel the same about "waiting for the other shoe to drop". We know we need to get on with our daily lives and cherish every day but the shadow of recurrence is always in the background. I hope you can find a way to get through the next few days until you know the results. Try to turn your face to the sun and let the shadow fall behind you. (Easy to say, but not so easy to do - I know).
Thinking and praying for you
Helen

Double Whammy's picture
Double Whammy
Posts: 2285
Joined: Jun 2010

By this time next week the CT scan will be behind you and you'll know the results. I'm banking on the number being the result of the new testing. Even if you do have a recurrence, your general health sounds terrific and you'll be up for whatever treatment is sent your way.

In the meantime (and always), you have our love and support whether you can get onto this site or not. What's with that, anyway? I've had problems the last couple of nights as well.

Suzanne

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I know that I will have to deal with whatever the results. You are soooooo right. The love and support here is a God send. I am reading these responses and they are such a huge comfort. Thank YOU!!!!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Your message was so beautiful! I have reread it many times. It gives me great comfort and hope.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Norma, I can understand your anxiety, but I really feel the change in the testing methodology may be the culprit here! You sound like the picture of health with a bundle of energy.

Will be waiting to hear what you find out. In the meantime, try to distract yourself with fun things to do and positive thoughts.

Hugs, Karen

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am so blessed to have wonderful ladies like yourself with which to share. I will try and take your advice. I have not slept much in the past few days. I think too much. Always trying to control things. I have to just give myself up sometimes that I am not in control. Your sweet message really has helped me. Thanks for taking the time. It is so very appreciated!!!!

Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

As others have said the rise could be the new testing procedure, inflammation or other reasons. I hope the CAT scan will be negative and you can have peace of mind again. I know the waiting can be so hard. Waiting for the tests and then waiting for the results.

You are at a good place with MD Anderson. I hope you can find some things to distract you until you get your results. I pray that you will continue to be NED. In peace and caring.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

MD Anderson is really a great place. Thanks for reminding me. You are so right. I know they have lots of resources there for me to use. I have to stay positive. Stay focused. I know everything happens for a reason. Guess I am not seeing the reason here yet. I should spend the time cleaning the house this weekend. That will take my mind off of things. Haven't changed the drapes in the living room in a long time. Spring cleaning may be just the ticked to take my mind off of things. A reminder that life goes on.

Thanks so much for your kindness. I also have been praying for you, dear. It is times like these that I am so thankful to have this place.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

To all of you that wrote, and those who, like myself at times, send their messages in a silent prayer.

THANK YOU!! Your comfort in this time has lifted my spirit. I feel so much better having read your responses.

I am humbled and blessed to have you warrior ladies who send strength, wise counsel, and share your hearts with each other.

In deep gratitude and returning the good wishes, love, and prayer back to all of you.

Will let you know the results. Whatever comes my way it makes all the difference to know that I have you ladies wishing me well. Love you, sisters in the fight. May we all find peace and healing.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Deaer Norma,

I wish I could make your waiting time easier. It is always the hardest time for me but I use complete denial. I black it out from my mind and do things. I know there is hidden hibee jibees when I do this but most often it works and gives my family some relaxed time when they see I'm not falling apart. I prayed for everyone last night. All of us.

Diane

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Dear Diane,
Blocking it out. Then wham I hits me again. Denial. Denial. Denial right now. We are taking a ride to Galveston this afternoon. Having a picnic on the beach and looking for seashells. Hubby is so sweet.

I thank you so much for your prayers. I read your posts all the time and pray for you. I know your daughter's wedding will be beautiful.

Double Whammy's picture
Double Whammy
Posts: 2285
Joined: Jun 2010

You change the drapes in the living room? How often do you do that? Or does this mean you're going to get new ones?

Inquiring minds . . .
Suzanne

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I took the easy way out and went to walk on the beach instead of cleaning and changing out the drapes. Might get new ones next week. Daughter and grandbaby coming for a visit for Memorial Day. Took a lovely nap this afternoon. Feeling better.

I guess I am into the fighting and anger stage right now. I feel great. Better than I have in years. Doesn't make sense that some stupid, arbitrary number can steal away my sense of well-being. I have to get a grip on this whole thing. Praying for the peace that I had in the beginning when this whole thing went down in 2009. I was reconciled to whatever would happen. Surgery, chemo, radiation, you guys know the drill. I recovered from all of that and am feeling like a million dollars!!!! This cancer is not going to win. I am going to find a way to beat it. Find a way to get on top of this whole thing with God's help. Good gracious!!! I sound like Scarlett O'Hara....have to reign in that southern girl thing a bit.

Looked at the schedule at MDA in the Integrative Medicine section and the day I have to go for the results I can go to have a massage and do a Laughter Yoga Class that morning. There has to be a silver lining somewhere. By golly!!! I am going to find it.

Love you guys!!! You are the best.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Norma....with an attitude like yours....I am even more convinced that you will find the silver lining.. And of course a nice massage and Laughter Yoga can't hurt!

You are an amazing gal and I am counting on GOOD news!

Karen

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Big hugs to you too!!!! I am determined that whatever the news it is GOOD news.
* God is going to take care of me.
* I have a great medical team.
* Wonderful family support.
* I have you wonderful ladies as support.
* I am healthy.
* All along the way I have had what I needed to make this journey.

I have today. In all of its wonder. Sun is coming up and I am going to savor every minute. Plan on sitting outside, weather is beautiful and cool in the morning and watching it rise. Going to Church a little later and thanking God for all the many blessings I have in my life. Like the old song "When you're worried and you can't sleep, count your blessings instead of sheep....and you will fall asleep counting your blessings..."

Like Linda said (bless you Linda) I can concentrate on dying or living. LIVING is my choice.

nempark
Posts: 592
Joined: Apr 2010

Hi Norma, my friend, hang in there, Let's wait and see what the results are and then we shall go from there. I love how much you rely on God. Yes, although we go through a lot of adversities, we can still take the time to thank God for all the many blessings. Here is a scripture that I memorized during my worst period and it was really comforting.

(Isaiah 41:10) Do not be afraid, for I am with you. Do not gaze about, for I am your God. I will fortify you. I will really help you. I will really keep fast hold of you with my right hand of righteousness.’ This really helped me to know that God is there for all of us.

By the way, change the drapes and make any changes you see fit and can afford. Let's enjoy life, be careful though, I was in that mood and called in a contractor to have my basement redone (it really needed it)$15,000.00 the cost.LOL. Just another thing I can thank God for. love you Norm. June

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I know God speaks to us through others. Your message came at the perfect time, dear friend. I came to Houston yesterday by shuttle from Beaumont. A really great thing this shuttle. Hubby needed to stay and run our busniess. Staying at my favorite place here. It is an extended stay hotel that caters inexpensively to those who are going to the Houston Medical Centers for treatment. Shuttle bus every hour to MDA. I am comfortable.

At any rate I woke up this morning and your message is so needed. I spent the night with my lap top and my Bible. I know God is in control of this whole thing. I go for my bloodwork, chest X-rays, CT Scan of chest, abdomen, and pelvis today. Your prayers and encouragement lift me up, dear June. I am so grateful for your message. I will read it over and over tonight. Seems like all through this journey I get the things I need right when I need them. Blessings. I just have to have my eyes open for them.

Tomorrow I go to see Doctor L for the results.

PS Don't have a basement. Wish I did. I love basements. Water table here too high.

Love and great big hugs to you, June. You truly are a gift from God today.

nempark
Posts: 592
Joined: Apr 2010

My friend, you probably will not get much sleep tonight, but never mind, you will be able to endure what ever the situation is. We never imagined that we could have come this far in the journey, but we did and will do it again if we have to. Norma, your response is wonderful, thank you. Tomorrow when you go to the Doc I will be right there with you holding your hand, we will do this journey together with all the other friends. May our Great God give you the strength, the wisdom and courage to endure. until, your friend June

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Thanks for reminding me of the amazing fact that we do endure. All of us. I spent the day having tests done. Can't begin to describe how wonderful MDA is for cancer patients. There are volunteers everywhere. All cancer survivors. Wearing blue jackets they are in the hospitality rooms to dispense coffee, tea or snacks. Enveloped in an environment that is meant to heal. I am humbled by the people I met today. One lady had a cancer so rare that there are only 20 cases of it in the world. Just amazing. The spirit of the people has a healing quality to it. I am humbled and strengthened by you guys and them.

Love you all!!! You know we pray for miracles everyday. The real miracle is us. All of you are a miracle. Right here, right now. We are alive at this minute. And that is a miracle. When I think about that it puts everything in perspective. I am glad for the miracle.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Norma, Gosh I sure wish one of us could go with you to MD Anderson. If I was wealthy I would quit my job and be a support for women going through all of the gut wrenching, anxiety producing things we endure as we pursue just one more day of a healthy life on earth. I am glad that you are a woman of faith and can find comfort in him.
Peace and grace be with you..((((HUG))) Lori

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

What a blessing. You have the heart of a servant, dear Lori. Your being there in spirit gives me great strength. Peace to you too...{{{{HUGGGG}}}} Norma

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

All is well. They didn't even retest for CA 125. Did a CT scan and CBC. All results are fine. Doc gave me a big grin and a hug. Said not to worry. See you in 3 months. Thank you wonderful ladies for your support. I can't begin to tell you how much it helped through the nights when I was so worried and couldn't sleep.

LOVE YOU LADIES!!!

bots's picture
bots
Posts: 53
Joined: Sep 2009

Norma,

What wonderful news! I know you will sleep well tonight. God truly heard your prayers.

Bots

Ro10's picture
Ro10
Posts: 1407
Joined: Jan 2009

I am so happy you got the very best of news, and you get to remain doctor free for 3 monthe. Celebrate each one of those days. Get a well deserved good night's sleep tonight. In peace and caring. Love you, too.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Oh, Norma....I am soooooo happy to read your good news!! I bet you are smiling from ear to ear and will be singing and dancing on your way home!

Now you can relax and enjoy a wonderful summer.....Dance on!!

MD Anderson sounds like a wonderful place to be, if one needs to be there!

BIG HUGS!!! Karen

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Oh, Norma....I am soooooo happy to read your good news!! I bet you are smiling from ear to ear and will be singing and dancing on your way home!

Now you can relax and enjoy a wonderful summer.....Dance on!!

MD Anderson sounds like a wonderful place to be, if one needs to be there!

BIG HUGS!!! Karen

Kaleena's picture
Kaleena
Posts: 1079
Joined: Nov 2009

Oh Norma!

I am soooooo happy for you! I can see your smile all the way to Pennsylvania!
Give your hubby a hug and get a good sleep.

Kathy

nempark
Posts: 592
Joined: Apr 2010

Thank you God for the many blessings and privileges that you so kindly grant to us. Norma, Norma, Norma, celebrate by giving thanks to God. May you continue being healthy for many years. My best wishes to your husband and the rest of the family on board and at home.

Today is a special gift from God

“Every good gift and every perfect present is from above, for it comes down from the Father of the celestial lights, and with him there is not a variation of the turning of the shadow.” (James 1:17

SHADOWS created by the sun do not remain still. As the earth moves, the shadows are ever shifting and changing. The Creator of earth and sun, however, does not change. (Mal. 3:6) “With him,” the Bible says, “there is not a variation of the turning of the shadow.” (Jas. 1:17) This fundamental truth about Jehovah (God's name) is truly a source of comfort and strength for us, especially when we face difficult trials and challenges. Why?

June

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

To say that you must be relieved is probably a huge understatement. I have been thinking about you since you first posted the rise in CA-125 and have hoped and prayed for good news for you today. May this good news continue always.

HellieC
Posts: 436
Joined: Nov 2010

I am so pleased for you I could dance a jig! You must have been so worried. Such a weight to be lifted from your shoulders. I will say thanks in my prayers tonight. Another warrior lady comes up trumps and continues to dance with NED. Bless you, Norma.
Helen

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

I'm so happy for you. I just new it was nothing to worry about, but with us cancer survivors that's like asking the sun not to shine! You can put that other shoe back up on the shelf.

Laura

susangr
Posts: 63
Joined: Oct 2010

A ray of sunshine! So glad for you. What a relief it must be. Curious as to why they did not retest the CA 125. Susan

Double Whammy's picture
Double Whammy
Posts: 2285
Joined: Jun 2010

I'm so happy for you. Joy is such a wonderful emotion. I hope you and NED remain partners forever!

Suzanne

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

What a great relief! Such good news ... with that weight lifted you can get back to fully enjoying life.
Annie

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending hugs...great news for you!!

Laurie

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Love you ladies!!!! Your sweet messages lifted my heart when it was so heavy. Bless you all. May we all find the joy and peace that comes with hearing good news. I read this board each day. Many times I don't write something but, I always offer up a prayer when I read what is shared.

I can't begin say how much this place has brought me comfort and strength. I hope I can do the same for others. Sharing the journey. Love to all. Norma

firstsister
Posts: 13
Joined: Sep 2009

So glad!! Pat

sleem
Posts: 92
Joined: Feb 2010

Went for check-up March 11', CA 125 results not back, requested by mail, received & mine rose too from 14 something to 21. Hubby & I the noted on the lab report 'new methdology' and wanted that explained. After many emails & responses, spoke with my wonderful doctor.

Will have my regular next appt. in 3 months on 6 month schedule. That would be 6 months from my last CA 125. This would not help my frame of mind on the idea of what if it 1)Had really jumped in the middle of new methodology & would go un-noticed in this change? or 2) How much did the methodology make CA 125 jump if any? 3) What is a normal range in this new methodology when 35 was the old one for moving into the abnormal range? 4) What measures are taken when a CA 125 does reach a high marker of concern for tests etc?

So, dr. & I decided to have a 3 month mid CA 125 before my 6 month check-up. It has been 3 months since my CA 125 @ MDA & I will have another one locally where I live for comparision. Even though the lab here might have a different methodology from MDA, my dr. will understand the differences.

I too had lows and highs on the scale of concern. I am blessed in NED & have felt all the feelings expressed here on this board.

I have not been on this page for a while. It is wild that 3 of us had jumps at MDA & how each of us reacted. Also, how different each of this came to be known to us.

To have saved us this worry, perhaps each of us can express that in the future when a new methodology is put into place, a brief note should be explained and the dr. explain this as well as what does a hospital gain by changing the methodology if it can't tell whether we have a genuine rise in CA 125 or not.

Just some thoughts and thank all of you.

Waiting to have the test and will let you know what occurs after it is done. Might take a while.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Norma and others,

Just catching up with you here. I'm glad all well with you, Norma. Just got to thinking that as these "bumps" happen and we get through them - and we usually do muddle through pretty good - that they probably make us stronger and more resilient in the end.

For what it's worth. Love to all. Mary Ann

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I guess I will have just have to wait til the end of Aug. to find out. I did find a super place to eat lunch at MDA. It is in the Rotary House and the buffet is super. I have never lost my appetite. I feel wonderful. I hope you do too, sleem. Each day is such a blessing.

Mary Ann!!! I have read your posts and sounds like you are doing well. I appreciate your stopping in and the well wishes....{{{huggggg}}}}}

Pat!! thanks for the response.

Here is to us all. A toast. Let us never lose the wonder of the moment by spending it on worrying about tomorrow.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

as of yesterday my CA 125 was 41 again. No sign of disease upon examination. Looks like the new testing at MD Anderson in Houston is more sensitve. So the 40's may be the new normal. Dr Levenbach was very positive and said "see ya in 3 months". Am 1-1/2 yrs since the end of treatment.
Best advice heard was "go out and enjoy life and quit worrying about the cancer". Going to take that advice.
Again thanks for all the well wishes. Praying for all of us. I think prayers are answered.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

That's good to know about the equipment affecting the numbers. My docs say that too - good advice for us to heed. Glad things are going so well with you.

Thanks for the prayers. I pray for us all too. Love, Mary Ann

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Hope all is well for you, my friend.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network