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High CA125 levels

Hello all

I am a 52 year old post menopausal woman. I have suffered with bloating and pain in my stomach and feelings of lethargy. My CA125 levels came back as 117 and my scan thankfully came back clear, I was sent for a repeat CA125 test three months later and this came back as 131. There is a history of breast, bowel, mouth and bone cancers in the female members of my family. I am worried that the levels have risen and I am aware that there are other conditions which can cause the elevated levels, however it seems the majority of other conditions the high levels can highlight are mainly due to conditions related to women who are still menstruating.

Does anyone have any advice on what I can do for peace of mind? My GP has referred me back to a gynaecological oncologist but it has been three months and I haven't heard anything.

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Hi there Tinkerbell

Apparently any inflammation in the body can cause raised CA125 levels. If I were you I would get back in touch with your GP to chase up the gynae appointment to put your mind at rest but hopefully there is nothing to worry about as your scan was clear. Sending positive vibes xx

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Thank you for your response. I do not feel well in myself and I have tried chasing this with my GP as it has been three months now. I don't think I would be as worried as I am if the results had lowered or even stayed the same.

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Hi Tinkerbell,

Welshandproud is correct. Inflammation (especially GI track inflammation) can raise your CA125 results.

CA125 is something I have researched heavily; so perhaps I can provide you with a bit more information about what it test! CA125 measures a protein that is on the found primarily on the surface of ovarian cells and in very small qualities in other types of cells. While the blood test checks for the protein level, other gynae conditions can increase it, such as endometriosis, PCOS, and ovarian cyst. Since the protein is also found, in extremely small quantities in other types of cells, other random conditions can influence it as well (Such as liver disease, infections, pancreatitis, other types of cancer, abdominal inflammation and other factors that are currently unknown).

The creation of the protein that CA125 shows is different for every person, since it's creation is believed to be an immune response to a condition. Some individuals immune response is much higher (having a CA125 of high thousands) while other individuals are much lower (no change in CA125 or a small change).

What type of scan did you have previously? CT scan or just an ultrasound? Also, have you seen a gastroenteritis? With the familiar history of bowel cancer, I would also speak with them. CA125 can be elevated with colon/bowel cancer also! I would also touch base with your gynae too, better to double check and rest your anxiety, than to not go and have something wrong.

Hope that clarifies somethings.

Best wishes,

Kris x.

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Hi Kris

Thank you for your response. I have had stomach problems for a while and I have seen a gastroenterologist and had biopsies, all came back clear. I had a transvaginal scan and then an MRI which came back clear. The gynaecologist discharged me and advised my GP to do a repeat CA125 test in three months time. I had this taken in August and that's when it had risen again, so the GP has referred me back to the gynaecologist. I am still awaiting an appointment. I did not have a UTI infection at the time of the test and I guess I just need to know why the levels are rising, but at the same time I don't want to be a nuisance.

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If you get a CT scan be sure to have the contrast. I had CT, no contrast and they told me nothing wrong 1 1/2 years before. So I went straight to stage 4, passed my 6 mo. timeline and am still here typing. Not easy or big fun, but working on my house and loving it. Moved around the 6 month timeline cut off. HA! on them. Keep searching and insisting that something is wrong, you know your body better that anyone else ever will. Even tho my kidney numbers didn't look that bad, I was having lots of retention. MRI showed ureter blocked. Must have stint. So get mad and insist on next step to get better. Blessings, Eileen

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Thank you for your response Eileen. The more I hear I'm realising that a lot of the time people are having to push to get the proper care. I'm sorry to hear about the missed diagnosis for yourself but I'm also pleased that you have come this far. Love and best wishes for your continued good health

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Have you considered getting an opinion from a gynecologic oncologist? You can find one by going to: foundationforwomenscancer.o...

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Hi all

After another ca125 blood test my result was 154. I have been referred to a gynaecological oncologist. My GP has told me that it is cancer. Strangely I feel relieved that It has been confirmed. I had to chase my referral as due to a lack of communication it was not followed up. I guess the worry will set in over the next few days, but it is reassuring to have somewhere to talk about this

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Don't forget: you're the same person now that you have the diagnosis as you were before it. Yes, it's a shock and you will have a lot to deal with, but this site is an excellent space to vent, rant, and find information. Just use it. In the middle of the night, day, whenever. Sending many blessings, Eileen

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Thank you Eileen

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Just checking in with you to see how you are doing. Hope things are going smoothly

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Hi Gwen

My operation date has been changed 3 times. I've attended one pre-op and had a date set for another pre-op. Due to the NHS cuts I am still waiting for a new date. My stomach is very swollen and I have a nagging pain in my back. I attended my GP surgery again and asked for another CA125 test. This was declined as he said it would still be high and I needed to wait unit after my surgery.

I feel quite anxious and frustrated at the moment, especially as everything I read says catching things early is the key.

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Being anxious is normal and reasonable and even more so in your case since the date of your surgery has been a moving target. Know that we are thinking of you and hoping that you get a date set in stone soon. I remember how uncomfortable I was waiting the month before my surgery. I got to where the only pants I could wear was a pair of old sweat pants. That’s what I wore into the hospital on the day of my surgery because nothing else fit.

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Thank you Gwen. I can relate to the sweat pants being the only comfortable thing left to wear. I look like I am trying to smuggle a beach ball.

Did your swelling go down after surgery?

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Yes. I had two huge tumors and the one Tim and parts of my intestines removed and after my first round of chemo the ascites went away.

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Good morning just an update on ehat has happened since my surgery - I finally had surgery in February. there were cysts found on my ovaries that were removed. unfortunately my ca125 levels have risen further to 173. I'm feeling despondent as my tummy was flatter and the pain I had on my left hand side and urinary symptoms have gone. I really felt that things had been resolved. my GP is unsure which route to take next and is in the process of contacting the gynaecologist again

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