Elevated CA 125; Clean Scan

• By Jennali
• Posted November 1, 2009 at 2:04 pm
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I am sure you are nervous. Although it is hard, try not to get too far ahead of yourself. Your doctor is doing the right thing to retest. I don't think any doctor will base an opinion on an isolated reading. They look for a trend up or down.

It could be that inflammation is the cause of your elevated reading.

OTOH, if it is the beginning of a recurrence, your doc will likely also wait. Studies indicate no benefit to treating on the basis of elevated CA125s. He will possibly continue testing your CA125 every month and scanning every 3 months. Most doctors would wait to see clinical evidence of disease to initiate chemo.

I do hope that isn't the case, but as you know, recurrences are all too common. I am in treatment currently for a recurrence in my lymph nodes. I continue to try for a chemo that will put me back into remission. We do what we gotta do.

It sounds like you are in good hands. Just hang in there.

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• By Milashka
• Posted November 1, 2009 at 2:39 pm
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I am in a similar situation. Stage IIIC dx 11/05, CA-125 in the 11-14 range since 3/06, jumped to 16 in July and 26 in October, clean CT scan.

A rise in stage 3 and 4 OvCa patients is strongly indicative of a recurrence down the road, within the next 12 months. My oncologist will only treat symptoms or finding on a scan, not the rising CA-125.

There is a much quoted study that says 98% of women in our situation (rising CA-125 post treatment) are about to have a recurrence. Another study puts it at 100% but it was done on 11 patients only all of which recurred. Here is a link to the study that I chose to believe. They put the percentage of recurrence at 86% which is more in line with what I have heard from doctors, nurses and forums, namely that the CA-125 can indeed go up for other reasons and does not necessarily mean recurrence - although that is the exception. But it does happen!

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&conf ID=65&abstractID=35566

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• By Nanamom
• Posted November 1, 2009 at 5:34 pm
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I'm IIIC diagnosed in 11/07 and I finished chemo 4/08. My CA 125 stayed steady at 2 until it went to 5 in March. I asked if we could do monthly blood checks and my doctor was fine with doing this. By late June it was 24 and I had my annual CT that showed nothing. Early August it was 75. I had another CT then that showed two very small lesions. I've been on Carbo/Taxol since August and after three treatments my CA 125 is back down to 5.

I was a real wreck during the months my CA 125 was rising. It's the waiting and worrying that's so hard - really waiting for the "other shoe to drop." Now that I'm being treated I've relaxed about it all. At the rate things changed for me I'm glad I was able to be tested monthly and that when the lesions appeared they were small. Jennali and Milashka have given you good information. We all hope we can avoid recurrence but for many of us it is something we do face eventually. We just do what we have to do and handle it. My doctor said that we never say cure with ovarian cancer, we treat it as a chronic disease. I just wish the treatments were a little easier to tolerate :)

Best wishes to you! I hope your numbers aren't indicative of cancer activity but if comes back, you will be able to handle it.

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• By Milashka
• Posted November 1, 2009 at 6:29 pm
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I must say I was a complete basket case for about a week, then the funk lifted. I read three forums and read about the many, many strong women who face and handle the recurrences and ongoing chemos. Strangely, this relaxed me!

I am now totally calm. I have a great appetite, sleep well, and am pretty happy. I do wake up at 4 a.m. some days a little panicky, but other than that I am fine. I am grateful that I got my normalcy back, so I can enjoy the next 6 weeks before I learn about my new CA-125 number which I expect to rise.

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• By Gia
• Posted November 2, 2009 at 12:14 pm
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Southstar, You might think about calling your doctors and asking if you can have a Ca-125 check in a shorter time period, maybe 6 weeks. Explain that you do not want to worry the entire 3 months about this level and a shorter time period would help you not fear it is such a length of time before recheck. OR--you could try to put it out of your mind as best you can and enjoy 3 months of freedom. It is a fight with your mind to try and not think about your health but put those thoughts in a box and try to keep it closed as best you can. Best to all of us, Gia

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• By Gia
• Posted November 2, 2009 at 12:14 pm
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Southstar, You might think about calling your doctors and asking if you can have a Ca-125 check in a shorter time period, maybe 6 weeks. Explain that you do not want to worry the entire 3 months about this level and a shorter time period would help you not fear it is such a length of time before recheck. OR--you could try to put it out of your mind as best you can and enjoy 3 months of freedom. It is a fight with your mind to try and not think about your health but put those thoughts in a box and try to keep it closed as best you can. Best to all of us, Gia

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• By lifeisgrand
• Posted November 2, 2009 at 5:09 pm
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When my Ca125 jumped 5 points just 2 weeks after I finished chemo, I did the same thing as Milashka and got online to start researching it. I found two other studies in addition to the one she quotes that suggest a 5 point increase still within normal range does accurately predict a recurrence. Seeing some of the huge numbers other have it feels inconsequential to stress over a 5 point increase but the research is there to confirm a coorelation. So yes this is scary. But keep in mind that is an absolute increase as in it stays up there. I did what Gia suggested and asked my doctor to repeat it in a month and he agreed to do so for my own piece of mind. Luckily it came right back down. Sometimes it takes a little time and patience to get the correct answers. It is not easy to sit and wait it out knowing what MIGHT occur at the end of the wait.

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• By southstar
• Posted November 2, 2009 at 6:29 pm
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Thanks to all who have responded! I have done the website research but wanted to talk to real women and I have found them!! This site is inspiring as well as a safe, comfortable spot. I thank all of you and look forward to many more chats! I will be speakiing with Doc this week, so we will see whayt is next. Thanks again!!!!!

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• By Milashka
• Posted November 3, 2009 at 8:19 am
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I saw that 5-point study as well. I can't remember though if the time frame of the increase plays a role too. 5 points in 30 days, 60 days, or 90 days?

I am freaking out about my 10-point jump but then again, it was over 3 months, so maybe just a 3-point rise each month. Or, it could have spiked to 37 (random number) a month before I had bloodwork without us knowing, and now it's actually coming back down.

That is why I guess they start checking the marker in 2-4 week intervals to really observe the trend, once a recurrence is a strong probability. Acutally, I am curious what would happen if we had the test every day for a month - what kind of trend or fluctuations that would show (whether or not we have increasing numbers).

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• By lifeisgrand
• Posted November 3, 2009 at 10:24 am
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The study I saw showed evidence of recurrence (on scan) about 60 days after the increase in CA125. But in general I think they look for doubling of numbers and as most follow up labs are done every 3 months, I assume that means doubling in that 3 month period. But I also believe that you can have a random increase due to other inflammatory things going on in your body and you can't go on one random value. Even as scary as it is.

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• By marce
• Posted November 19, 2009 at 9:28 pm
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That is a great ca125. I had mine done last week & it is 190. I was diagnosed April 2007. I have a repeat ca125 every two months. I am feeling great and have had a great life since getting over chemo. I am wondering if anything else could cause the elevated ca125. Do you know?

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• By RhodaLois
• Posted November 19, 2009 at 9:51 pm
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Remember CA 125 is not a diagnostic tool but in our cases, having OVCA, it gives the docs a good idea what's goin gon. Mine has always been low...at the highest when I had my hysterectomy, it was around 36, I think and now has settled down to the 11-13 range. Doc explained it's not the best test for me. he puts more stock in the CAT scans and how I look and feel.

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