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Chelee
06-19-2006, 11:21 PM
I have asked my oncologist for the longest time if she had ran a CA 27-29 on me? If so..what is it? She said she hasn't and they aren't reliable. Well I had my herceptin today and decided to ask my infusion nurse if I could get a copy of my CA27-29. I made her think I knew there was one there. (But I had no idea if there was or not?) I just knew I was at the end of treatment...so I figured if there ever was going to be...it would be now.

Well...she comes back and hands me one. (It worked.) :) But the question is now...I have no idea what is good or bad? No one has discussed this with me before? This was my LAST full cycle chemo before my Rads start. So what am I to think about my results?

The reference range says: 38. And my results was 25. Is that good or bad? I don't know if a higher number is bad...or you want lower? Any help would be appreciated.


Chelee

kristen
06-19-2006, 11:54 PM
Hi Chelee,

My you poor thing, you have been through the ringer! I am happy to report that while your in normal ranges that you don't have anything to worry about unless you have symptoms that would make you think otherwise because they aren't always reliable. If something doesnt' feel right for 2 weeks go and get it checked out. with TM's they look for a pattern, if the numbers keep rising or out of range, in range, etc. But with only one test run, I don't think they have much to go on. My Ca 27-29's were always in range and they were always rising every 3 months but were always still in range. During thes times I have had to go in and have my annual chest and mammagram and they did a ct on the abdomen and everything seems fine. So I don't worry about it. Good Luck and just keep an eye on it. Your instincts seems to be working for you so trust them.

tousled1
06-20-2006, 05:38 AM
Tumor marker tests are not very reliable, especially when you are in active treatment. There are many things that can affect the results. When I was in neoadjunct chemo I had the test done several times and each time it came back with a different number -- always within the "normal range." Before surgery we knew that my axillary lymph nodes were involved but I had no idea that I would have 14 positive nodes!! Don't let the tumor marker test be your sole indicator of how your cancer is or is not progressing.

CherylS
06-20-2006, 05:38 AM
Dear Chelee,

My normal range has been between 25 and 32. I got a little scared when it went up to 32. Had it tested again yesterday and it was 30. As long as it went back down I feel OK. My onc. does these markers every 3 months. They can fluctuate for unknown reasons, but can also be a good indicator of a possible problem. Sounds like your are looking good!

astrid
06-20-2006, 06:29 AM
My ONC only tests CA27-29for metastasized patients.

The range should be less than 39.

From the web:

In breast cancer with bone metastases, CA 27-29 may be useful to monitor the response to therapy, since response of bony metastases is difficult to evaluate clinically or radiologically. Measurements of CA 27-29 have also been widely used for monitoring patients with breast cancer for early detection of recurrence.

Chelee
06-22-2006, 01:21 AM
Hi Kristen, I am so glad you & the others said I am in the *normal* range. (With all I have been through...that is a nice thing to hear!) At least you said these tests aren't always reliable. That is what my oncologist told me and as you know I can't fully trust my oncologist at this point. I sure want to...but its impossible at this point. But she did say they weren't reliable...but she FOLLOWED UP with at that time... "Thats why I DON'T ever use them".

So see what I mean...she said she doesn't use them...but yet I was sneaky and got a copy from my infusion nurse. So my oncologist DOES do them..but she decided she wouldn't bother to tell me! That was a lie in my opinion! So my thinking is now...if she had THIS one...I bet she has done them all along...so that means she WOULD have a few to compare too? (I hope?)

I haven't gotten to see her yet & let her know I have a copy of this CA 27-29. I am sure she WON'T remember telling me she never does them. But at least I can find out if she has an older one and if this one is better or worse?

I feel so much better now that you guys said I am in a normal range. I realize you can't go by these completely...but at least its something. Thanks for letting me know how this works...as I know what to ask my doctor now when I get to see her. :)

All I get from her is the feeling she doesn't want to spend any time with me, let alone anyone. She just thinks she is suppose to tell you what your chemo is for the day..and send you on your way. Your NOT to ask questions, or slow her down. I find it MORE then frustrating.

Also thanks for the little tip about "if something doesn't seem right for about two weeks...go get it checked out". Good idea. I think I would HAVE to anyway..because every little things worries you if its out of the norm. You know what I mean...we all understand that far to well.

Thanks again Kristen.

Chelee

Chelee
06-22-2006, 01:34 AM
Hi Astrid, Thanks for copying that info from the web about the markers. Very helpful. At least you are all telling me I am in the normal range. Thank goodness. You said your onc only checks her metastasized patients. That would be me. Thats why I thought it was strange when she told me she didn't check markers? If I have involved lymph nodes...I think it would be important and at least one way to keep a eye on it?

I appreciate your time and trouble to post that for me. I get so much more information here then I could ever imagine down at my cancer center.

Tousled & Cheryl, I wanted to personally thank you both for your replies. Seems everyone here agrees. Makes me feel better. So far it looks as if I am in the normal range & pray I stay there. And yes Tousled..I WON'T let this marker by any means be my sole indicator. I just wanted something since I was at my LAST full cycle of chemo. I read so many people on this board had them done...that it made me wonder why my onc didn't do them? Now I find out she does when she flat out told me she never does them.

I bet I will find out they at least did ONE when I first started..and this one was because I finished. We will see if I ever get to see my oncologist?

Thanks to all...

chelee

astrid
06-22-2006, 05:52 AM
Chelee, When I go to the infusion chair, I always ask for my lab results. You can ask for lab results from previous times also. Next time you go ask them for a print out of all you labs. You can then compare your liver levels and white blood counts etc.

I am keeping a journal. My sister passed away ten years ago from Breast cancer. No one remembers her exact tumor size, status, how she felt, when she reoccurred etc. I know we are all different, but she had the same staging as me and I would love to compare. I have a younger sister. She is 6 years younger then me and I fear she is next, so I want to do this for her and for me.

tousled1
06-22-2006, 01:42 PM
Even though I know that CA27-29 tumor markers are not all that reliable I asked my oncologist for one today. Only reason being I had my surgery 2 weeks ago and just started my Herceptin today. I wanted a bench mark. I did the same thing mid way through chemo and then when I finished.

Chelee
06-22-2006, 06:01 PM
Astrid, I just recently asked for all my lab work results which they did give me. Except I noticed they left out all the lab work that reflects my Glucose, Creatinine, Potassium, AST, ALT, Protein, etc. I wonder WHY they kept those from me? I know I was mad at my onc once when I kept mentioning a pain I had over where my liver was. I flat out asked if my liver function was ok since she NEVER mentions anything to me. She had no choice and said "Well, its been high, but I am keeping an eye on it."

I thought, gee thanks for telling me!!! I would of NEVER known had I NOT asked myself. I know she is the doctor and knows what is ok and whats not...but I feel its my right to know when my labs are showing things out of range. But she seems to feel its none of my business...or thats how I feel anyway.

Everything I read says to STAY involved in your treatment plan and care. To ask GOOD questions. Keep track of your labs, etc. So I just do whats expected of just about any patient...and they act like I have no right to know...or like I am questioning them. (I could NOT be any nicer if I tried..so I don't know why its like pulling teeth all the time to find anything out about myself?)

I got upset with the first onc I had for this same thing...plus he did NOT listen to me. So I changed to a new onc...and at first I really liked her. She was great. Now she has turned out to be worse then my first one. She won't check out things I am concerned about on my body. Such as a node I showed her that looked like it was getting bigger. She just said for me to keep an eye on it. (SAY WHAT!)



I have a second opinion coming up next week at a well known cancer center. I hope they can tell me something? I wish it were closer...but I will make the drive once to get their opinion on whats been done to me so far..and what hasn't been! I have been gathering ALL my paper work and then some for this place I am going. So far I have the report from my surgeon, and all the reports from when they landed me in the hospital...and all my labs with the exception of the ones that show my liver, glucose, creatinine, etc like I first mentioned to you. So I will have it all at the latest by next Monday.

It seems like you and everyone I run into on these boards don't have any of the problems I do. I am fighting for my life and this place thinks its a joke it seems. I am sure glad the majority of people don't have to go through what I have to get their lab work, questions answered, etc.

Anyway, that is a really good idea for you to keep all your medical history & a journal for your sister just in case. But thank goodness you guys are ahead of the game now so that she shouldn't have to go through this. She can make sure she gets checked more often. But maybe she will be the one it totally skips. :) But either way...its GOOD to keep records like your doing. You are thinking ahead...thats for sure.

Thanks for your reply...and hang in there.

Chelee