hi all
Has anyone had the experience where your CA125 was within the normal range at the time of your diagnosis? Mine was 29 the night before my hysterectomy. That was in 2020 and the CA125 since then has been in the single digits even when it recurred in 2022. My June 2023 CT scan didn’t show evidence of the disease.
Doc is also using the HE4 as a marker. It’s 126 now. It’s been steadily climbing.
Does anyone have the HE-4 test done on a regular basis?
Thanks everyone Good Morning 💕
While CA125 is a sensitive test for me, I've had several friends over the past 18 years that either never had an elevated CA125 or it never rose with a recurrence. It used to be they had to be followed with CT Scans. But for some people HE4 can be a good marker to follow in place of the CA125 test. It sounds like your cancer falls into this latter category. Like the CA125, its my understanding that what's more important in assessing whether or not you are recurring is the trend of your results as opposed to absolute values. Hopefully someone will reply that has direct experience in being followed with HE4. Best wishes to you! Gwen
Hi. I am a the same. CA 125 was 8 at diagnosis and 6 at first recurrence. It is a constant source of worry for me. I do have CT scans every six months. I asked my doctor if I could have HE 4 tests but she said they didn’t know enough about it.
Hmm maybe the HE4 isn’t very reliable either.
wow mine was at a 297 went down to 127 after surgery then a 8 after chemo now at a steady 6
I was diagnosed in 2014 with clear cell carcinoma. My CA 125 wasn't taken but after surgery it was and it was an 8. It's been a 6 ever since. I've had no reoccurring cancer to date. The ca125 isn't the only marker other blood work can be an indication also. Hope this helps. My Dr also did intraperitoneal chemotherapy. It's supposed to stop reoccurring cancer. Or delays it. Best wishes, liz
Hi Lizchips, if you don’t mind sharing, what stage CCC? So glad you’re doing well!
My doctor says CA-125 just isn’t a good indicator for some people, so it shouldn’t necessarily be relied on. I’ve never heard of the HE-4 marker but now I’m going to try to learn more about it.
Hi,I also have experienced a recurrence with ca 125 at 14 after 22 months in remission previously had been at 6 for over a year. I was fortunate that my monthly bloodwork was steady trending up for 5 months so Dr decided to do CT scan early. I had a 2nd debunking surgery and will do another 6 rounds of chemo. The number alone just isn't reliable. I also know that we have to pay close attention to changes in our body. Looking back I definitely wish I'd kept a diary there were some other signs that I had been 'hoping' were just normal stress stuff and I think I might have pushed for the scan sooner.
What were your symptoms that you thought were stress related?
I had weeks of constipation followed by days of diarrhea. I was extremely tired, and didn't get great sleep either. ( For context I teach in public school for a academic preschool program ) I was also taking lynpazara for maintenance and those are also side affects from that. I was pretty consistent in managing those with diet and mirlax. I also had an ostomy at one point so my guts are always a little different after those as well. But looking back I know it was a bigger swing in symptoms for longer than it should have been. I was spending hours a day in the bathroom.
I also had constipation and then diarrhea through this cancer. I feel for you. I found that if i take fiber capsules, it keeps me regular but diarrhea is an every day occurrence.
I get monitored with CA125, HE4 and CEA. There was a scientific article that the combination of CA125 and HE 4 were much more predictable than CA125 alone and think it said that it was highly accurate. The HE4 came out of Washington state (woman scientist sorry don’t have details but it’s been about 12 years that I’ve been followed this way.
I have been doing the HE4 since diagnosis in 12-2019 on a regular basis. I had to fight for it a bit, but has proven to be a better tumor marker for me.
Yes, I regularly get ca125, HE4 and CEA
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Stage 3c OC, ca125 rising slowly 
Totally unexpected diagnosis
