I am new here. I have been reading through stories similar to mine and I wanted to share mine in the hope I can get your opinions.
I recently had increasing hip/pelvis/ low back pain - I have issues with my hips anyway but the last couple of months it has been increasingly worse. I went to the GP, I explained my pain, that I’m increasing in size around my middle but not putting on weight. I wee about 25 times a day and constantly feeling full/bloated. She did a full blood count and my CA-125 marker came back at 117. She called me and said they are referring me for an ultrasound as I may have a cyst or something. I going for an ultrasound and trans vaginal ultrasound - all is clear. I am then referred to a Gynae and they told me the scans are clear so they will just do a repeat bloods in 3 months. Although relieved the scans were clear, I can’t help but still worry about the raised marker - aswell as my symptoms. I feel like I should have a CT Scan but the Gynae didn’t seem too worried. What are your thoughts on this? I’m 32 with 4 children. I need to know what is causing this raised marker. Should I get a second opinion?
Thank you
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CWoods44
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Yes keep pushing for an answer. My mum has 3 clear ultrasounds, a clear ct scan but raised bloods, 166. They only found the cancer via the lap they did as a precaution. I don’t want to scare you but keep pushing.
I agree with N-A-58, 3 months is too long to wait. If you were diagnosed at stage 1 you would have a very good chance of a cure. That chance starts to disappear the longer you wait. Ask for a second opinion at a specialist centre, this is your life not your oncologists.
Hopefully it will be nothing but at least you will know xx
I would push. It can be an indicator of infection, diviculitis and so on. I was told this. But it can also be a flag. I agree with Lyndy. I didn’t push, accepted an IBS diagnosis and am stage 4a. It’s your life good luck 🥰
You know when something isn’t right your own body. Keep pushing for an answer. CA-125 can be raised due to endometriosis, fibroids, pelvic inflammatory diseases and similar conditions but this needs to be investigated.
hi, I totally agree with all the other comments. I’m not a pushy person and because of this the medics missed three opportunities to diagnose. My friends kept urging me to push and when I finally did, I was diagnosed at stage 4 advanced. It may or may not have made any difference, but I will never know. Please push and I wish you well xx
I went to the gp quite late Initially because i had asked for a routine appt but It became urgent. She responded with the correct tests and a request for an ultrasound and scan, however there was a wait. I felt so ill and had a rapidly expanding waist. I asked them what I needed and booked to go to a private hospital for a ct scan and ultrasound. The CT scan came first, then after the ultrasound the doctor told me to go straight to A and E which I did. 8 hours later I had 7 litres of fluid drained and was diagnosed stage 3.
Totally agree with everyone - keep pushing for a CT scan, it can show more than an ultrasound. (Ultrasound comes first because it's cheaper!) I was diagnosed late because of incompetent GPs and I'll never know if an earlier diagnosis might have made a difference. Good luck, be firm and don't take no for an answer! Xx
Sorry to hear about your raised levels. I have also had raised ca125 fluctuating between 50-95 now for almost a year with clear scans (x2 ultrasounds and a CT). I know how anxiety inducing it can be. I have been waiting 3 months in between each blood test, I think that’s what they usually do if the scans are clear, that’s a good thing.
I am 26, so my gynaecologist said she isn’t too worried about the levels, and that this test is extremely unreliable in pre menopausal women as raised levels are most often caused by adenomyosis, endometriosis (which often will not show up on scans), cysts, fibroids or even just where you are in your cycle.
Please bare in mind that you are posting on the ovacome forum, so you will get a lot of responses from the lovely ladies who unfortunately have already been diagnosed. You should also check out the endometriosis forum etc.
not saying you should stop pushing for answers, you deserve to know what’s going on, however please don’t jump to worst case just yet xx
Yes, do keep pushing for an answer. I was told my ultrasounds showed nothing sinister, though my CA125 was 149. I was finally referred to a bowel consultant who put his hand on my stomach and could immediately feel nodules, and a CT scan followed by biopsies confirmed Stage 3 OC.
Yes ask again. It may give you the wonderful confirmation that is is not OC. The stories below are distressing in that women picked up the signs that their bodies were not as usual but dismissed or delayed.
I am encouraging my friends/colleagues/contacts to share the B.E.A.T poster and #tell3people. As pointed out diagnosis at an early stage gives you a chance of a cure compared with the 70% who present at advanced stages.
There are many things that can cause CA125 to rise, including normal menstruation, any inflammation anywhere in the body (even a cold) and hormonal changes in younger women. Repeating the bloods in 3 months is a good thing, if there is a significant change then, especially if the CA125 number doubles, that might need further investigation. Have you been tested for urinary tract infection?
Thank you for sharing your experience here. I'm sorry to hear that your raised CA125 marker has been causing you worry.
As some of our members have helpfully commented, a raised CA125 can be due to various reasons, some of which are of no cause for concern. However, you are entitled to ask for a second opinion from another doctor if you would find this helpful. This could simply be by requesting to see a different GP at your practice.
Here I am sharing a link to our booklet on getting a second opinion: ovacome.org.uk/getting-a-se.... This includes information about how to ask for a second opinion, as well as possible advantages and disadvantages of this.
Our support team are here for you. If you have any questions or anything that you would like to talk through, do get in touch. You can give us a call on 0800 008 7054 or send us an email: support@ovacome.org.uk. We're here from Monday to Friday, 10am to 5pm.
Hi. I am post menopausal and was 70 at diagnosis so your cicumstances are very different but I would pursue your concerns. My GP was very good and referred me immediately. I had the ultrasounds and these showed no issues. The gynaecologist I saw could find nothing wrong and was quite dismissive but because my CA125 was so high referred me for a CT scan which showed Primary Peritoneal Cancer. This was confirmed stage 3C at biopsy. Usually this rare cancer is not found pre menopause so please don't worry but it is worth pointing out that your symptoms may have another cause. My ovaries and womb were perfectly healthy when I had surgery months later but I had exactly the usual symptoms of ovarian cancer as you describe.
I had a mysterious rise in my CA, 125, but the CT scan showed nothing. I knew something was up and insisted on PET scan It showed that one of my dormant tumors in my back had begun growing again. I am about to start radiation. I would be very concerned about any rise in CA 125. Wishing you the best of luck.
INSIST ON A CT & yes I am screaming this at you. This is very similar to my story. It took my gp 7 months to send me for a CT & the oc had metastasised into the peritoneum by then. This might not be the case for you & I pray it isn't but please don't assume doctors are right until they have done a CT. 🤞💜
I definitely think you should have a CT. My first USS was negative but 4 months later my CA125 was 5000+! I have HGSOC 3c. Push for a CT. Best of luck xx
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CA-125 test
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All the symptoms of OC but nothing seen on pelvic ultrasound or TV ultrasound and CA 125 of 11
