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Here I just celebrated my 1 yr remission and now my CA125 is slowly rising. Hope I didn't celebrate it too quickly. For those of you who have had a recurrence, how big of a jump in your numbers did you have in the beginning? My numbers are low, but a rise nonetheless. Beginning of April-11, end of April-14, now 17. I know those of you with huge numbers could probably slap me upside the head. Let the worrying begin......I'm "skeered."
Cancer Surgery Irritable bowel syndrome Avastin Breast cancer Anxiety Primary peritoneal carcinoma Pain Depression Stress
I'm right with you. Fourteen months of remission and April was 6, May was 12, and just this morning was told I'm at 24. So a bit more dramatic than you since I'm doubling and quadrupling. Am waiting for the doctor to call back now. It is scary stuff but you just pick up and fight again. Right now I'm a bit shaken and needing to know what comes next.
Nanamom, you can't help but worry. I mean I know we're both are still below 35 ....but it still scares me. I dread the next test. Will it rise too? Oh well......thats how this disease goes. Always a waitin' and always a worryin'. lol.......let me know what you find out
Please don't panic yet. Some of us have CA125's that like to jump around a bunch. Mine went from 13 to 20 and then back down to 13. Last 2 checks were 17 and then 18. Of course I wish it were back at 13, but I'm still in my "normal range." Good Luck!!!
You are still in normal range, so don't panic yet! My CA125 at my 3 month post chemo check was normal. I think in the teens. At my 6 month check it was 154. Quite a dramatic change. It continued to double every month after that. I am celebrating that it finally is dropping, from over 3000 to 2700 or so.
My doctor always tells me not to get hung up on the numbers. My CA125 before surgery, when I had the biggest tumor load, was only 448. I have less cancer now, but much higher numbers.
Hang in there, girlfriend. I think you're gonna be just fine!
I am growing to hate the ca 125,,it is like hanging your hopes and dreams on a number that acts funny and makes you not know.
Irrational I know,,today I feel irrational.
I hear ya! I have Primary Peritoneal Carcinoma and been thru one complete set of chemo My CA-125 was 10 last time checked - will hear what itis now at first of week. What I wanted to say is my dr told me they went by the scans as to whether or not to do more chemo. My scan was good and I was all smiles, thought I had conquered the world and then I told him I was confused b/c when I first told I had this cancer (never heard of it) that it was awful. etc. .... I had been looking toward being in remission or cure and he informs me and to bring me back to THE REAL SIDE OF THINGS it was good THIS TIME. It won't always be like that. It will come back. Not maybe, but it will. He said there is no cure for this disease just whenever it comes back, then they will treat me with chemo as to try and get me back to where I am today. I am taken back, slapped in the face. However, I know where I stand now. wished I would have known before. It is now being referred to on my diagnosis as retro peritoneum.. Still doing some searching on this. So confused, so ticked off, so well informed!!!! I don't think so.
I wish they wouldn't even do the stupid test. Why not just use it AFTER cancer shows on the scan, and during and after chemo. Now I gotta sit and worry for 2 months till my next check up. Whew!! I hate it!
I'm here for you katelynsmamaw! I may not be the best support but I'll do my best: )
My numbers went up last visit, 3 points. Like you, I was worried, and the nurse knew it. She called me the next day with the new reading which was only a point lower. Have you called the office to speak with a nurse or your doctor? Maybe you can go in for a check up in one month.
Lisa
I had a very slow rate of rise, with everything being well under 35. It was not until the count doubled, did it nearly double again more quickly. All still under 35. We waited until my routine CT (at the first doubling) to discover two enlarged lymph nodes under 2 cm., for which I am now being treated.
We are all different. Please don't let the worrying "own" you. We must not let it destroy the good days that we still have to treasure in front of us. And the worrying alone will neither cure us or diagnose us any more quickly. I know that this next phase is over-used, but I'll throw it out anyway: "It is what it is." Try to keep the fears from winning. We have too much real fighting that our bodies and minds need to be strong to do!
Sheara
Sheara, your right--it is what it is. And we can't change it. I had a yeast infection too, I wonder if that could have caused a rise... I'm gonna try not to worry and enjoy the rest of my summer! Thanks for all the replies. You guys make me feel better ;)
Don't think you have anything to worry about. Many things can affect the CA125. Keep a positive mental attitude.
Shirl
please, please demand a CT if you have ANY pain. I had a level of 11, 13, and then 17 BUT I began having pain in my kidney region and the top of my shoulder. It had to become severe before I complained enough to get a scan. My Dr just looked at me like I was crazy but when the results came back we were both in shock. The liver lesion had grown and I have more lymph nodes involved. I am changing doctors, switching to a female. I believe they are better listeners. Good luck and God bless
Don't panic yet - you're still in the normal range. If it keeps going up in quantum leaps, then you have trouble and your doctor will order a scan. The only number range that matters (average or very high) is your own because it's unique to your body, so don't compare to others.
My CA125 has always been very accurate for me. For my first recurrence - which came after a 6 year remission and with NO pain at all - I went from 11 to 40 at my 6 month checkup (given my long remission I had started 6 month checkups). It quickly went to 59 and 107. if I hadn't been checked and just waited for pain to show up, who knows what state I would have been in?
For my second recurrence (which happened 10 months after remission from that first one) I went from 5 to 15 with 3 months. Yes, that is normal, but I know my body, and I was afraid it would keep going. Sure enough, it did. I started having pain and 3 months later it was 84 and then 116.
I just finished 8 rounds of Doxil. My reading after 4 treatments was 12 (very good); after 5 treatments it was 13. Still good, but I started to wonder even though it was just one point. Sure enough, after 7 chemos it was 47. So no remission, and now I start a new chemo in about week.
You have to go by your own body. My reading has been accurate for 8 1/2 years, so I'm lucky. I get scans when my doctor is suspicious and to confirm elevated CA125's, and to monitor treatment progress. He does not do them for routine checkups when I'm in remission and is careful about the amount of radiation I am exposed to. My doctor is wonderful - careful, very responsive, aware of everything about my condition and listens to what I tell him. Can't ask for more than that.
So, try to take it slow and see how things go. Yes, there is always a chance for recurrence, but try really hard not to live your life in fear of it. Do I worry - yes I do - but over the years I've learned to try to balance the fear with living a "normal" life. I know you can do it. I've read your other posts and you are a strong lady. I'm hoping the levels stay good and your remission lasts much longer. All the best.
This black cloud that hangs over our heads is horrible to live with. When I have tried to explain it to my family, they just don't get it at all. Thank God we have each other to talk about it too...it is such a relief to know that there are people out there that can relate to our anxieties. Ultimately I have the most faith in the physical tests like CT, MRI, and PET that give a window into what is going on inside. I continue to see ladies post that they did have CA125s that jumped around and it was not cancer so that is a bit of hopeful information. Hang in there, Shonna. I know the fear with this thing is paralyzing at times. CindyXXXOOO
Ladies,
It would help if we knew the standard error of measurement for the CA125 (or maybe it wouldn't).
For example, one of the cognitive tests we use in education has a SEM (standard error measurement) of 3. That means the same child might score a 127, a 130 and a 124 on the same test. I do know when I went from 16 to 18 my oncologist told me if they ran the exact same sample through, they could come up with those numbers. Another thing to look at is whether the same lab is running the test. Slight variations in testing could result in slightly different scores. Also, there are two scales of measurement, although I don't know what they are.
I'd think if the same doctor is administering the test, you might get the SEM, but wouldn't have two different scales used. I'd ask, though.
Finally, I'm betting the yeast infection is playing with the scores.
Hang in there. Let us know what happens. We're praying.
Blessings.
Mine started rising slowly at about 12 months from 5 to 7 to 9 to 11 and then it doubled from 14 to 28 or 29 and doctor ordered CT scan showed "shadow". MRI 3 weeks later showed some "masses" on my liver. CA 125 was 52 at that time. Started gemzar, carbo and avastin (placebo?) trial and it is down to 5 and CT scan showed all clear after 3 treatments. Just finished 4th and have 2 to go.
I hope your's is not recurrence but if it turns out to be - there are a lot of treatments out there!
Good Luck!
JoAnne
I have recently found out that many times the number will jump depending on what lab the test gets sent to. You can't compare numbers from different labs. When my first recurrance was diagnosed my ca125 was only 20 but that was at Sloan, I am treated locally and they use a different lab and the number was around 40. It is so easy for the doctors to say...it's still within the margin of error, don't worry. However, I worry anyway. Keep an eye on it and try not to "dread" the next test. If it goes up more you should insist on getting a pet scan to see if there is any activity. The sooner you catch something the better and the more informed you are the better you can fight. I guess my advice is stay informed, but don't let worry consume you, you need all your strength to fight.
my appt is on the 14th of July,but Im dreading it already. I just had my blood drawn for a ca125 and im concerned. Its been rising gradually from 31 to 46 to 56, and now im having pain in my right hip. Im trying not to jump to conclusions because, I do run and I hope that maybe I just overdid the running. I hope I dont need to go back on chemo. I was getting used to having hair,eyebrows and eyelashes again, and Im presently looking for a better job.
(I'm the first reply up top.) The good news is that my doctor's investigating things right away. I'm having ab, chest and pelvis CTs in about two hours. Very scary to be back at this again after doing great for a year. I do have some low pelvic pain now, too. The worst for me is that I'm waking up every night and can't get back to sleep for hours. I think it's harder not knowing than finally dealing with it. I keep trying to think positively - it might be nothing but even if it is something at least we're getting right at it.
Paintergal,
One bit of information that might lessen one worry. Most of the time, the chemos that are used fro a recurrence do not cause hair loss. I took Doxil, and it caused none. I am now on Topotecan. It has caused a little thinning, but not enough that anyone but me notices it. Some of the chemos are less frequent than the first line ones, also. For instance, the Doxil was only once every 28 days, so job would be pretty doable.
Sending some good thoughts your way. I know the waiting is hard.
Nanamom, I hope your scans reveal good news.
The not knowing is tough. At least when you know, you can start doing something.
BTW, the night time waking is a classic symptom of depression. I would say to not hesitate to talk to your doctor about an antidepressant if it continues. I would be a mess without mine. I still feel legitimate sadness, but at least I am sleeping through the night and not crying at every sappy commercial on TV.
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