Hi, it's the first time I have posted but wondering if any have had the same experience as me. I was sent for a scan after having bloating for a while that did not clear after being diagnosed celiac. The scan came back clear but my CA125 levels were at 35.9 so the docs said I needed my bloods doing again in 6 weeks, I have had my bloods done again and now risen to 37.5. the doc has referred me 'urgently' with a two week wait for appointment. I have been having pain in what I have always described as at my left ovary and pain during sex also so actually thought the scan might flag up a cyst or something and was relieved but also disappointed that they hadn't found what was causing the pain, I didn't think it could be cancer, just a ruptured cyst maybe. Iam forever tired also but alway put this down to being celiac and not absorbing vitamins properly.
When the doc told me my bloods flagged something, I thought it would be iron levels or something, she didn't say cancer when she said I had to wait another 6 weeks for more bloods. I googled (I know I shouldn't) but I did use the NHS information and the symptoms reflected the issues iv been experiencing. Iam now quite concerned as the pain has been ongoing for several months.
My question is, should I be worried? How low should a CA125 level be?
The pain in my left side is more consistent now but I don't know if that's because iam more aware of it.
Thanks for reading and any support or information would be appreciated.
Written by
AprKe
To view profiles and participate in discussions please or .
You will find everyone’s CA125 can be hugely different… most of all the ladies on here have similarities as far as diagnosis, treatments, etc…. But we are all unique when it comes to how we felt physically, mentally, and emotionally that led us to seeking medical advice and being diagnosed with one condition or another.
You will be told all the time to not to get too wrapped up with your CA125 number as it’s not a reliable marker for everyone. That being said, I know that I get quite anxious about what mine will be every time I have it tested 😬😬😬. Trying NOT be focused on the number is really easier said than done, and I’m sure we all do it… but it’s not consistent in being indicative of a diagnosis.
Do NOT check in with “Dr. GOOGLE”!!! Much of Google’s information provided is far outdated and I will be honest… you will scare the crap out of yourself and be super stressed! And stress and inflammation of any sort can increase your CA125 😉
There are many ladies here that their CA125 has not fluctuated much from the normal range ( under 35)…. then there are also ladies like myself…. my CA125 was 13,061 😳 upon diagnosis. However, it was down to 26 the end of September (I would be 90 days post chemo & surgery at this point).
(I am now on monthly testing, so will have another review of it next week).
I find my mind wondering what my CA125 level would have been prior to having cancer??? Maybe mid 20’s is the lowest it will ever be??? Or could I possibly ever get down to less than 20???? What would have been a normal number for me??? SEE… not focusing on it is so much easier said than being done 😂.
The wait between tests and scans is hard…but be patient and try not to stress too much. I feel you are justified in seeking a diagnosis to explain pain and symptoms and will keep you in mind daily that you get some answers. I encourage you to focus on positive thoughts and shifting of energies to bring you Calmness, Relaxation and Peace. It may not be cancer. Regardless of what you find out, all the ladies here are very supportive and can provide experience and knowledge that may be beneficial for you.
Hi. It’s hard to tell about CA 125. Mine was 8 at diagnosis of Stage 3b cancer. I also had a pain in the vicinity of my left ovary which turned out to be cancer but it showed up in a transvaginal ultrasound. I hope you don’t have ovarian cancer but you should follow up on all tests to be safe. Xx
Thank you for the reply, I have had an ultrasound scan and the 'wand camera' up inside but nothing was flagged up on these scans just my bloods are at 35.9 and a 6 week wait to have them repeated which showed and increase to 37.5. iam just confused as to what they can do next, as my ultrasound was clear. 🤷 And the pain in my left ovary has been long-standing 😣
You could ask for a CT scan or even better a PET scan but your numbers are not really alarming. I had long-standing pain too but it suddenly got worse. The CA 125 could be caused by many things.
Easier said than done but don't google. Go to sites like this or Macmillan or Cancer Research for reliable information. Google has information that is out-of-date and some even downright wrong. All our CA125 levels are different and they can rise because of infections, inflammation and even a covid jab. Your levels are still in the "normal" range but it is really good that your doctors are following up with as many checks as possible. The waiting for results is awful but be thankful they seem to be on the ball. We will all be thinking of you. Hope all goes really really well. Best wishes x
It could be inflammation but if unsure insist on seeing specialist. Sometimes gp can write letter to take to AandE department to get CT scan. It’s good at spotting any cancer and ascites ( build up of fluid in abdomen common in Ovarian Cancer). Definitely repeat ca125 regularly. If it isn’t wonderful, if it is there is so much they can do now. Good luck xx
Thank you for the reply, when you say it could be inflammation, is this inflammation of my ovaries or that region do you think? I have been referred to the gyny, iam hoping they do a CT scan x
I think general inflammation in your body can put ca125 up as well as a few other conditions not cancer related but the possibility of cancer should always get looked into just in case. Xx
Thank you very much for your post. I just wanted to message to share some information which I hope will be helpful. The normal level of CA125 is below 35, however, as many members have already replied, there are a number of benign causes which may increase CA125 levels other than ovarian cancer including other conditions of the womb and ovaries. Some women also have a naturally higher CA125 level. We have a factsheet about tests for ovarian cancer which includes information about the CA125 blood test and I will put a link to it here: ovacome.org.uk/tests-for-ov... .
You mentioned that you have been referred for an appointment to look into this further. At that appointment the specialist should explain the next steps and identify any further tests that may be appropriate to identify the cause of the symptoms that you have been experiencing.
We are here if you would like to talk things through with a member of our support services team before your appointment. You can contact us by calling 0800 008 7054, by emailing support@ovacome.org.uk, through instant chat on our website or by messaging through this forum. All of our support services are available Monday – Friday 10am – 5pm.
Hi, so the ‘normal’ upper range for CA125 is 35, but there are many many things that can affect that number, including having a cold, or an infection, recently having had a vaccination, having a cyst or other benign growth etc. Some here will have been diagnosed with cancer at very high (in the thousands) CA125 levels. Some with only a moderately low number. Some people have an elevated CA125, but absolutely no cancer (see other factors above which can influence the count). CA125 is not a definitive diagnostic tool on its own, it simply helps to form part of the picture. Ultrasound, CT scans and other tools are used to create a more complete diagnostic picture. You’re on the 2 week pathway so your situation is being taken seriously and you will receive the best possible treatment for whatever the team decides is the issue. Wishing you patience and the strength you will need to get through this wait. Xx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ca125 level has risen
Fluctuating ca125 levels
What is your CA125 level?
Feeling worried due to high ca125 level. 
Hello! Could endometriosis cause a Ca125 level of 96?
