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Positive CA125, Negative Ultrasound Positive CA125, Negative Ultrasound

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  #1  
Unread 11-26-2000, 08:46 AM
Positive CA125, Negative Ultrasound

I had my first CA125 screening for ovarian cancer after reading Gilda Radner's book years ago. My mother died of it in 1953. For the last 5 years or so I have had the blood test along with ultrasound. Mid-October this year I got a call on a Friday that my CA125 was elevated. My ultrasound was scheduled already for a few weeks away but we moved it up to that Monday. It was the most frightening weekend of my life and I wish I had found this group or something similar at that point. I also realized that although I am in the health field (research) I have avoided learning anything about ovarian cancer because it was all just too scary.

My ultrasound was normal but my gyn sent me to an oncologist anyway because she didn't know what to make of the positive results of the CA125. The oncologist and I both agreed that despite the neg. ultrasound, a complete hysterectomy was the way to go. I couldn't bear the agony of annual screenings as well as not being totally sure that I was cancer-free without having them actually take out my ovaries and look at them. (They are fine.)

Anyway, I was very angry about the CA125. I knew it wasn't a great test, but I had no idea how high the rate of false positives actually was. I also learned that it is associated with a variety of benign conditions and that there is no correlation between the level of the CA125 and whether or not there is cancer present. My level was only 64 but I heard numerous stories of levels in the 200s and all they found was endometriosis, or nothing at all. I learned that ultrasound alone is being shown to be a better predictor, with a high rate of accuracy. I think the emotional impact of a false positive result on a screening for such a life-threatening cancer is probably underestimated by the medical community. I know they are working on better screening and I pray it comes soon. Early detection is the best hope.

As a way of expressing my gratitude for being healthy I plan to make donation to an organization that funds basic research in this area. If anyone has a suggestion, that would be great.
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  #2  
Unread 11-26-2000, 07:15 PM
Positive CA125, Negative Ultrasound

Dear Judy,
I wish that there was a dependable test for Ovarian Cancer.
It angers me that more research has not been done to date to get a test on the market. Before my tah/bso, I too had a CA125 test taken. My results were in the normal range. It was explained to me that those results only mean that the cancer cells were not in my bloodstream. So, women with tumors that are borderline may not elect to have surgery due to the results of a CA125 test. I am afraid for one of my friends that is taking her doctors word that her tumor is probably just a fibroid. She is not interested in getting a 2nd opinion, and is in no hurry to have her hysterectomy. Ovarian cancer is treatable if caught in an early stage. I hate for any woman to have a hysterectomy, but I can sure understand how you feel that now you will have peace of mind.
I hope that your recovery is going well. For me, it took until week 5 for me to feel like I was really recovering.
I was so happy to be able to drive at 2 weeks post op, but when I would get somewhere I had no energy to do much!

I am looking for an organization to donate for Ovarian Cancer research too. I want an organization where 100% of my money to go for research. I was sent an unsolicited request for donation from some Cancer society where only 40% of the money went to research. Not enought for me! Also, I know for me it is helping with my emotional healing to promote ovarian cancer awareness in my community.
Good luck to you.
  #3  
Unread 12-05-2000, 04:07 PM
Positive CA125, Negative Ultrasound

And then there are other things that can cause an elevated ca125. Bladder or bowel problems. CA125 is NOT a diagnostic test, it is a marker test. That is why it is not used to screen for ovarian cancer. I have IBS on top of the OVCA, and have a higher than normal ca125 because of that.

Maggie
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  #4  
Unread 12-05-2000, 05:15 PM
Positive CA125, Negative Ultrasound

Maggie:

That is why it SHOULD NOT be used to screen for Ovarian cancer, but it IS used to screen for ovarian cancer. That is the problem. There is mucho confusion about this test. I have learned from this site that women thought they were being screened for uterine cancer with it. This thread accidently got split up and continued under the title CA125 - you should read the conversation there.

Meanwhile, I'm interested to know how yours was found and how you are doing?
  #5  
Unread 12-06-2000, 07:37 AM
Positive CA125, Negative Ultrasound

My story is a joke, but I am glad of it. I was diagnosed with type 2 diabetes, have poly cystic ovarian syndrome, and the medication I was put on for diabetes often reverses infertility in women with PCOS. I went to the ob/gyn early for birth control (I would say I got it!) and he THOUGHT he found fibroids, wanted a baseline ultrasound for the time when I started having troubles with the fibroids if I ever did. The ultrasound found one ovary 16 cm across, the other 9cm and from the pathology report 2 weeks later, both growing rapidly. From there, a CT scan, ca125, and plans for surgery because the CT scan gave 11 possible types of tumors, and at 45 I am pretty much through with those organs, and was scared and wanted them out.

My ca125 was 237 and I have no clue what it is now. I get blood drawn for a 2nd one on Monday.

Needless to say, the doc did another pelvic, and even with the ovaries that enlarged, could not feel them, and that scared him. Since that time, he, my primary care physician and the oncologist have all admitted to me that even with a pencil thin patient (I weigh in at around 200) and the most thorough exam, they can rarely feel the ovaries. Apparently they will move around a bit, and anything but a solid rock hard tumor will just slide away from them unfelt.

I think that this says something for a yearly transvaginal ultrasound, just like those mamagrams we hate to have! I believe it should be standard operating proceedure!

  #6  
Unread 12-06-2000, 09:24 AM
Positive CA125, Negative Ultrasound

Hi all,

I know I'm going to be in the minority in my opinion of the CA125 test for screening use but... This test saved my butt!

In March I had gone to the Dr for a follow up xray for a virus I had at the time. While there discussed the screening tests strictly due to my family history. My Dr ordered both the CA125 and CA2729. I was at the time experiencing no problems GYN related, no pain, bloating, etc. The following Saturday she called me with the results with both good and bad news. The CA2729 came back normal, the CA125 however was extremely elevated at 656!

I ended up having two ovaries the size of grapefruits (where they were hiding I have NO idea)had surgery, it had spread to the bottom of my stomach, appendix, a small section of my colon and into one node. Yep, stage III!

So, needless to say, that although this isn't the best or most reliable test it worked in my case. I wouldn't have known anything was going on until it was even more advanced that it turned out to be.

I've seen several programs since then featuring researchers working on more reliable screenings tests for ovarian cancer. I hope they will soon be able to find one that's more accurate for use with all women.

Vicki
  #7  
Unread 12-06-2000, 11:23 AM
Positive CA125, Negative Ultrasound

Question for Maggie: Have you had surgery yet? I felt the same way you did - I was scared and I wanted everything out!

Vicki- Was that the first CA125 you ever had? Did they accompany it with ultrasound? I can't imagine that ultrasound would not have picked up what was going on with your ovaries. Also, I'm curious how old you are- the CA125 is much more accurate with post-menopausal women. What is the CA2729 for?

I had always thought that a false positive was no big deal, and that it would be worth it for the true positives that are found. But false positives ARE a big deal. Not as big deal as false negatives, which are also high on this test.

I think I mentioned this elsewhere, but I was told by my oncologist that research out of the University of Kentucky has found vaginal ultrasound to be extremely accurate. It seems to me that ultrasound alone makes more sense until the new screening tests become available. I also think people with strong family histories should be offered surgery as an option as soon as they are finished childbearing. I asked my gyn why this was never discussed and she said it was because I only had one first degree relative with the disease, and they only recommend it if there are two. I just realized that doesn't make sense in my case. I am an only child so its more like an unknown rather than me having a healthy sister to judge by.

Anyway, Vicki, I hope you do well. However they found it, I'm glad they found it.

  #8  
Unread 12-06-2000, 09:30 PM
Positive CA125, Negative Ultrasound

Hi Judi,

I used to do medical billing and worked at one point in a OB/Gyn office so I knew the test existed but I had never had one prior. The didn't do a ultrasound at the time, they actually sent me for a MRI after the blood test and a very painfull pelvic exam. The Drs thought I could have had this going on for a year or two. Unfortunately, I had missed my prior years exam so we "might" have found it earlier but then again might not have. (I kicked myself quite a bit for that screwup) The CA2729 is the blood test thats given for breast cancer, they use it more as a tumor marker more so than a screening. At the time we weren't sure if my insurance would cover the gene testing so decided on that blood test due to my family history (mother/aunt - breast cancer, especially mother at a very early age, we lost her at age 44). Oh, by the way, I'm pretty young for ovarian - 38. Wasn't menopausal before but I sure am now.

I too am so glad it was found when it was, I truly believe someone was watching out for me and must have nudged me to request the test done it the first place. I'm so sorry you had such a bad experience with this, I know what the panic of an elevated result can give.

There was a segment the "Today" show did a while back regarding a benefit for ovarian cancer research. I'll try to find the information again on the name of the program.

Thanks so much for the well wishes, I'm responding much better to the new chemotherapy I'm having so I'm determined to get back to my normal life just as soon as I'm finished with it in February.

Take care,
Vicki

  #9  
Unread 12-07-2000, 09:56 AM
CA 125

Hello All,

I just thought I would add my two cents concerning the CA 125. For me it proved to be a good tool in determining which doctor to have do my hysterectomy.
Brief history: I was having heavy bleeding, irregular periods and paps every 3-6 mths for 3 years. My doctor, at the time, told me the atypical cells and heavy bleeing were symptoms of perimenopause (I am 42yrs), and continued all the paps as a tool for determining cervical cancer. Finally I went to a new gyn, who on the first visit diagnosed a large ovarian cyst. I had a CA 125 (l03), and two ultrasounds (vaginal and pelvic). This same gyn informed me the tumor needed to be removed surgically and put me on her surgery schedule, the earliest being 5 weeks out. She insisted it was not cancer and that if it was the wait would be okay. This news was all I needed to kick start my brain into action. I got on the phone and finally found an oncologist who would see me in short notice. She saw me five days later and operated the very next afternoon. Finally, someone had listened to me and believed me! After a TAH/BSO I was diagnosed with ovarian cancer and will be having my second CA 125 in early FEB. At this time they are thinking the cancer was all removed with the surgery. I ended up having more than one tumor--one very large to attract their attention and some smaller ones hiding. I am very thankful to have had my surgery done by a skilled gyn oncologist who operates on women with my specific cancer rather than a obgyn, who is not that familiar. So much for my brief history!
One thing I did for myself during this time-before I found this site--was to go to Borders, etc and our library and read all I could about ovarian cancer and having a hysterectomy. In a way of helping others and also for thanking my wonderful oncologist, I am donating a few books to their office for other women to check out as needed. One will be the Hystersisters book and I haven't decided which cancer books to send along. But this was one way I felt like I could help others as I could have used during my ordeal.
Lastly......this site has been so wonderful to me. I have logged on in the wee hours of the night when all was asleep just to have a friend who knew exactly what I was experiencing. Thanks to each one of you!
Warmly,
Margo TAH/BSO ovca 9/21/2000
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