Please explain....................

Mary Jo · 09-01-2007, 05:35 AM

Good Morning everyone,

You know as of late I've been having concerns about my ovaries. I've had some crampy feelings, lower back aches and bloating. Although I did just have a pelvic exam by my GYN. in March (and all "felt" fine) I decided to call and go in again as I wasn't feeling comfortable with how I was feeling "down there." So, yesterday afternoon I went in. My GYN is such a kind,, compassionate and understanding man. I was so happy I went in.

First off he just stood and listened to my concerns. I told him that although I thought I was probably fine, the days of assuming anything were over for me. He totally agreed and said that yes, I should go in when I have any concerns. That's a hard thing for me to do though. Even before breast cancer I never went in to the doctor. (Just for my annuals) I don't just call for anything. And back in the "old days" I'd always say .........oh, everything's fine. And it always was. And then breast cancer. After that we KNOW that bad things can happen to us. So although I hate to call - hate to go in and hate to hear what they might tell me I did go.

So I went in yesterday afternoon. He did an internal exam and said "things felt fine. Normal size. No lumps or bumps." Then he preceded to do a vaginal ultrasound. He said that my ovaries looked normal size - he saw no growths - and also that my abdomen had "very little fluid inside" which is also good. He said because we don't know if I am "going into menopause or not yet" he is going to have my er/pr levels checked to see where I am in the menopause journey. (I had a hysterectomy 10 years ago - ovaries still intact so no period to guage my hormonal status by). Also, he has decided to have my CA125 levels checked because of symptoms. He did warn me that a CA125 test isn't a good screening tool because the number can vary (as I know from reading these posts) but because I am having symptoms he feels it would be a good idea.

So.......my question to you who know about CA125 tests. What am I looking for? What is a "normal" number?

Sorry for all the rambling for one little question but wanted to share my "ovary experience" with you all.

So thank God with me please, that all went well. He said the "symptoms" I'm having can definetly be hormonal and he is sure that is all it is. I feel good about it as well but am happy I went in and got the "ok" from him.

Thank you in advance for you help.

Mary Jo

Becky · 09-01-2007, 07:40 AM

A normal number is below 36. When I was getting mine done before I had the ovaries removed, it ran between 6 and 10.

CA125 is very reliable when done in conjunction with the transvaginal ultrasound but when done alone, it can be meaningless for some women. What I mean is that many women on this board report that their CA27/29 is very reliable for predicting (for them) that their mets are improving (or not improving). It is meaningful for them. For others, it is not meaningful. It is the same with CA125 although you don't know if its meaningful or not to you unless you get ovarian cancer. But many studies say the ultrasound and tumor marker together are good.

Mary Jo · 09-01-2007, 08:07 AM

Thank you Becky. Ok, so I'm rootin' on a low number.

Mary Jo

kareneg · 09-01-2007, 08:37 AM

I am also rootin for a very low number. Your in my thoughts and prayers and I am sure all will be well.

Becky · 09-01-2007, 08:48 AM

The main thing to remember is that even if the number is higher - your transvaginal ultrasound was clear. When I had a 6, I had 2 structures on my left ovary (wasn't anything) but I think you get the picture. The "picture" is worth a thousand words, much better indicator of anything versus the number.

You could relate it to bc. High CA 27/29 but clear scans is much more desirable than a low number but met spots on the scan.

lexigirl · 09-01-2007, 09:04 AM

Hey MareJo,

I just wanted to chime in with you that I have been having crampy feelings in my back as well ovary area. Even after I have already finished my period, the symptoms linger. I had my pap two months ago and my gyn said that all felt normal. Your doc sounds terrific. I am happy that he is treating you cautiously even though I know you are going to be just fine!

Hugs,
Lexi

KRISS · 09-01-2007, 09:27 AM

I just went through all this. My ca125 came back at 15. He said it's right in the middle, so good. However, the ultra sound showed a small cyst on my right o and my uteran lining was way up, in some places close to 25cm. I am having everything removed on the 24th. It is just what is best for me. Glad to hear your US showed nothing and will pray for good numbers.

AlaskaAngel · 09-01-2007, 10:30 AM

Hi Mary Jo,

I didn't see anything in your message saying whether or not there is ovarian cancer in any of your family history so I would guess not?

My aunt died of ovarian cancer so I found a clinical trial for those with bc who have a family history for ovarian cancer and who are monitored for ovarian cancer. Part of the purpose of the trial is to collect data to see if yearly transvaginal ultrasounds plus periodic CA-125's are helpful, and part of the purpose is to use the blood collected to also look for better markers for ovarian cancer.

My CA-125 has varied from the 6-12 in the 4 years I have been in the trial and all TVUS's have been clear.

AlaskaAngel

hutchibk · 09-01-2007, 11:16 AM

I have 25 year old friend with b/c who is not Her2+. She is one year out from chemo. In June she went to MD Anderson for a 3 month c/u. They did not make a habit of checking her TMs, but this time decided it was time to start checking and screening. She is BRCA+. They did a CA125 and it came back EXTREMELY elevated. Up to around 9000 I think. They went crazy looking for ovarian cancer. Wasted almost 2 months (which is easy to do in the big research hospital, non-personal setting) doing CTs, Ultrasound, labs, etc. Her MDA doc went on two week vacation at about 6 weeks into this journey, and my friend was freaking OUT! During that two weeks she went to her local onc here in town who did a bone scan and PET and learned that it wasn't Ovarian at all, it was b/c mets in her pelvic area, wide spread bone spots and nodes. MDA had been chasing their tail looking for ovarian and hadn't even considered yet that since the CA125 also picks up b/c, it could have been mets. I know this doesn't relate directly to Marejo's post, but just a little heads up about the CA125.

PinkGirl · 09-01-2007, 11:32 AM

Hi
My onc doesn't do the blood work for tumor markers - says they are unreliable unless you already have mets.

hutchibk · 09-01-2007, 11:53 AM

In my case I am blessed that my onc did tumor markers from the start... we had a baseline when I finished chemo and checked them every 3 months after. When they started inching up 16 months after chemo, it turned out to be our earliest indication of mets activity and we decided to do scans just to be sure. All scans showed clear until we did the PET. But, because the TMs were inching up, he knew it would be prudent to look further (PET) and thank goodness we did. They have always correlated directly with my mets and have always helped us identify mets extremely early. They can be unreliable if used as a stand alone tool, but when used as a part of the whole picture, as a tool in combo with other tools, they can be very informative. If we hadn't been checking mine, I would not be here now. In my case we believe that relying only on scans and symptoms can lose us valuable time, when TMs can give early indications of potential activity. Though sometimes TMs rise and nothing is going on. And sometimes something is going on and TMs don't rise... But, better safe than sorry, and err on the side of an abundance of caution I always say...

Mary Jo · 09-01-2007, 02:34 PM

Thank you everyone for your replies. I look forward to hearing what my CA125 number is and am very thankful my ultrasound showed a "pretty picture."

Ya know, I was thinking today...........geez, when does it all end. It seems we just move on from one thing to another. I know as we get older things happen no matter what BUT it does get very old after awhile. On September 12th I am going in to have a MUGA as my new onc. wants to see how my heart held up through all the chemo and herceptin. I am almost 1 year out from herceptin (October 11) so it will be interesting to see. BUT, another doctor appointment. Then in October I am seeing a gastrointestinal doc. as my digestive system has been way different since chemo. My stools are always looser now and I think it's a good idea to have that area of my body checked as well. Of course I eat way more veggies and take fish oil so that probably explains some of it but still want to make sure. I am fast approaching 48 (Nov) and think my colonoscopy should take place at this juncture. So............................................agai n I ask.............DOES IT EVER END

LOL LOL - I know the answer everyone JUST needed to get that off my chest.

Thanks for being a great group. I appreciate each of you.

Mary Jo

PinkGirl · 09-02-2007, 06:50 AM

I am confused by Becky and Brenda's posts. If the numbers are up, and everything can still be okay AND if the numbers are normal, and you can still be developing mets, then what do the tests tell you? I take this to mean that regardless of the numbers, you should be having all the tests and scans anyway. I am confused.

tousled1 · 09-02-2007, 08:27 AM

My tumor markers have never been reliable - 15.3 at diagnosis of Stage IIIc and hasn't changed much in either direction since then. The marker that we are using in conjunction with symptoms and scans is my HER2 serum marker test. My oncologist has found that my HER2 serum level is very sensitive and a slight change in it indicates a need to look into things. Everyone one is different when it comes to tumor markers. For some women it is a fisrt indication that something is going on and for others a rise or fall means nothing. There are so many things that can affect the results of tumor markers that it is difficult to solely rely on them as a prognostic tool. The women whose markers are sensitive are very fortunate.

PinkGirl · 09-02-2007, 11:56 AM

Did you have the TM and Her2Serum tests before you developed mets
or did you start having them after? Is the Her2Serum also a blood test?

tousled1 · 09-02-2007, 12:41 PM

I had tumor markers done at initial diagnosis and repeated about every 3 months -- never varied. The HER2 serum test is a blood test. I had a baseline done before I began Herceptin treatment and then every 12 weeks.

Here are links with info about the HER2 serum test:
http://www.her2support.org/patientb.pdf

http://www.her2support.org/faq.pdf

rentrac · 09-02-2007, 01:09 PM

Dear marejo,
I know just how you feel. Sometimes you just need to get it off your chest (so to speak)... but becoming a professional patient is a hard way to go! My sis-n-law had unexpected health problems last fall that kept her on pro status for a few months. She's a very successful lawyer, so when she admitted she was almost overwhelmed by the interference and continual juggling of appointments, etc, it made me feel a little better. One of the great things about this site, we ALL know and completely understand. Good luck on your MUGA. I'm having one day after tomorrow.
warmly,
Rentrac

Mary Jo · 09-03-2007, 05:15 AM

Well Brenda's reply isn't exactly what I was looking for

Although, so sorry about the person this happened too I am surely rootin' on a number of NOT 9000 and mets all over the place.

The transvaginal ultrasound was clear so is hoping the CA125 number is low and I'm done with this issue.

Thanks everyone for your replies,

Mary Jo