Hi everyone. I'm just wondering if anyone can share a similar experience to mine and let me know their outcome.
I'm 46, 2 years ago I had a raised CA125 of 45, was sent for a us scan, nothing found.
After returning to my GP a fortnight ago due an ongoing (non Covid) cough and other gyny issues like bloating, abdominal pain, I had another CA125 test which has come back at level 65. I am now waiting for a hospital appointment for another scan but am driving myself insane in the meantime. I lost my mum to breast cancer in 2018 and I know ovarian and breast cancers are linked. Also this cough is worrying me as I've read advanced oc can progress to lungs. Also my father died of cancer when I was a girl.
Any thoughts from those having had similar...as in a 2nd, higher, raised result 2 years after the 1st?
Thanks in advance x
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Grangesidegirl
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Along with the bloating and other symptoms, it does sound like you need a scan. As for the cough, I've had one too, it's due to hay fever and an accumulation of mucus in my nostrils.
I know it's hard, but please try not worry. In the great scheme of things, 65 isn't a really high CA125. Mine was nearly 800 on diagnosis.
CA125 itself is meaningless, because it's raised in any condition - e.g. IBS - which causes bloating in the abdominal/pelvic region.
You can expedite the scan by asking for one to be done privately. It costs around £300, but prices vary. Or you could ask for a private referral to a gynae-oncologist - that's a surgeon who specialises in the diagnosis and treatment of ovarian (and other gynaecological) cancers. That will cost a similar amount, but it could accelerate your case on the NHS pathway.
You could ring your GP, explain that you're worried and why, to ask for advice and reassurance.
Or you could try to cope with the worry by posting here and calling the Ovacome Helpline in the morning. It's run by highly experienced people.
I hope this helps a little, along with a cyber-hug. I was where you are 11 years ago, I then got a late stage diagnosis, and here I am now. Alibe thanks to a good oncologist, a rule great husband, and lots of others who helped me along the way.
Thank you that is really helpful Victoria. I shall await my hospital letter which will hopefully be here in the next week, and see what date I get. Its the CA125 which has freaked me out the most so your information has put my mind at rest a little. I wasn't aware IBS could cause it to be risen and I've suffered with that for years, so fingers crossed
Victoria has given lots of good advice already, but sometimes volume adds reassurance. If you search CA125 you will see lots of posts showing how ‘normal’ varies hugely!
Personally my CA125 increased from 56 to 236 in 3 years, also with nothing found at the 1st vaginal ultrasound. This was considered a small increase for OC – obviously 65 is much lower and as already suggested there are other likely explanations. As you don’t have a scan date after 2 weeks, maybe this is your GP’s thinking? I was also wondering if you were to have a chest x-ray to identify inflammation/infection associated with your persistent cough, that may also explain CA125? I did due to a simultaneous chest pain & was prescribed anti-biotics – this was entirely unrelated to my diagnosis 3 years later and could show your coughing is unconnected too.
I hope you get reassurance from your scan and are given another explanation for your symptoms. If this is the case, personally I would still ask for regular CA125 monitoring, then you get to know your own ‘normal’ and future worrying is avoided.
Thank you, my GP said she is referring me for a scan ASAP so hopefully I won't be waiting much longer. Thanks so much for taking the time out to give advice, it's really appreciated. I am feeling much calmer about it today after some reassuring messages 💓 xx
Hi Grangesidegirl hopefully you will get to the bottom of it soon & that all will be OK. I don't want to worry you further but you wanted to hear from someone with similar symptoms. Before I was diagnosed with OC I had a persistent cough for several months. My GP referred me to a respiratory clinic, I had blood tests, allergy tests, a camera down & lots of other tests. Just before I was given the all clear by them I had started bleeding but didn't mention it to them as it was a respiratory doctor not a gynaecologist. Shortly after that I returned to my GP again & she did a CA125 blood test which came back nearly 2,500. She referred me to a gynaecologist and after he examined me he could tell me I had cancer so just keep pushing till you get answers & 🤞 it will all be OK & you won't have to post on here again. I wish you all the best 💕
Thank you for sharing your story, I hope you are OK. That was a huge CA125 level, that must of been scary for you. Puts things in perspective for me, thank you. Hope you are soon well. Take care 💗💗
Things happened so fast that I didn't have time to really think about everything. Let me know how you get on & hopefully you won't have to wait too long for the scan & get good results X
Try not to drive yourself mad worrying, although I know it is easier said than done. There could be lots of explanations. The cough could be connected to increased pollen levels or to a recent covid jab. A lot of peple get a cough and runny nose for several weeks after the jab. The abdominal problems could be IBS. And, your C125 level is not very high in the grand scheme of things. Lots of people on here report levels in the thousands. However, you do need a scan -- if only to be reassured -- so get back to your GP and ask him or her to push for one urgently. Also get on to the hospital Xray department and check that you have been referred for a scan and ask if there is a date yet. Make a nuisance of yourself until you get a scan. Then I hope all is well and you never need return to this site (except to say "hi and all is well"). Best wishes x
I didnt realise I could check on the hospital website about my scan so I'll look into that, thank you. My results came through last Wednesday and I was hoping I would come home from work today (Monday) to a letter on the doormat with a scan date but not yet. I'm feeling alot better about things today though as I've realised 65 is not a particularly high level and I feel confident it can be put down to ongoing IBS issues. The cough is just hopefully coincidental. Thanks again, your time in replying is really appreciated xxx
Hi, you have lots of good advice and I'm glad that you are getting an ultrasound. As other ladies have said the raised CA125 could be due to IBS or other benign things, particularly as given your age I am thinking that you are pre or peri menopausal, where there are multiple explanations.However I do think that we need to be cautious in interpretation of disease by use of CA125. CA125 is personal to every woman so a lady with CA125 who has it raised in the thousands may have same disease progression as another with only slightly raised or normal CA125. The symptoms are also very important diagnostic tools. My reason for saying this is not to frighten you as most probably you have a raised CA125 for nothing serious but just to make sure you don't let go. I was diagnosed 3c with CA125 in low hundreds, recently a recurrence was diagnosed at just over 35 although I did have symptoms. Good luck, please let us know how it goes xxz
Thanks so much for your concern and advice, I really do appreciate the different perspectives on my situation. I hope you are staying well and send love. 💟I think something I will certainly do moving forward if everything is clear, is ask for some repeat blood tests over the next months/year or so just to keep an eye on my ca125 level. Do you mind me asking, what were your main symptoms xx
I completed the great north run the day before diagnosis so had mainly been well but started to feel odd , I thought I needed an internal but couldn't work out why. I had stitch for months before hand and went to gp who sent me to hospital who told me it was muscular. I started to have constipation, then got sporadic severe pain in lower abdomen and bloating ( last 2 just before diagnosis).
I was diagnosed with stage 3 c ovarian cancer My ca 125 was only 57 my doc didn’t believe it was cancer but surprise Stage 3c GET SCAN and don’t give up until you get diagnosed with whatever you have!
I had ZERO symptoms I thought initially. However after doing research I found out that Ovarian cancer symptoms mimic menopause. As if we don’t have enough to deal with! I used to ride horses easily for 6 hours and when I turned 60 found I was a bit tired and shortened the time. Also gained about 20 lbs and was always starving. Well I believe the cancer was trying to feed itself as since I had surgery in Dec 2019 and chemo until April 30 2020 and Avastin until May 2021 I have lost 30 pounds without trying. More needs to be done with this disease.
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