I'm so sorry to bother you all, I am in the UK AND AM 36 years old. I have been having some awful problems for the last two months. Originally went to the doctors beginning of this year for stomach pain, worsened after eating, bloated, pelvic pain and side pain, and needing to empty my bladder all the time but having to push my pee out? Also change of bowel habits alternating diarhea and constipation. Doctor ruled out Uti prescribed two loads of antibiotics and said maybe infection somewhere and off I went. Finished the course it's made no difference. Symptoms still the same however I'm also now constantly period cramping. Back to the GP and had bloods taken last week, CA125 level was raised to 40. Family history of OC and dropped 7lb in the last 3 to 4 weeks. GP done an urgent suspected cancer referral. I rang today to see where my referral is and they told me it's been classed as urgent with a 15 month waiting list but doesn't warrant the 2 week pathway. I have small children that depend on me and this has absolutely terrified me, all the guidelines I have read states a scan should follow a raised Ca125. Has anyone experienced this? I have contacted private hospitals they won't do private imaging without a consultant letter, which I don't even know if I have one yet, and they won't let me pay for private consultant because my CA125 is raised?
So sorry for babbling on I'm just at a lost and very worried.
Written by
Mamma12345
To view profiles and participate in discussions please or .
Hi, you’ve done all the right things and this treatment isn’t good enough!
I would suggest (a) going back to your GP and asking them to accelerate the appointment for you (b) ring the Ovacome helpline and asking for their suggestion or last resort (c) turn up at A&E with exaggerated symptoms and see what happens!
So sorry to hear all this. Sounds like you need to go back to your GP and ask/put pressure on them, also put it in writing (So clear paper trail) and asking why, with a family history of ovarian cancer, and why if you have a raised CA125, and why becasue you do have what could potentially be symptoms ovarian cancer, especially the losing of 7pounds (I'm not doctor so of cousre still could be other things, so needs to be rulled out if not ovarian cancer.) you do not meet the threshold for the urgent 2 weeks pathway and please could they look into getting you seen within the 2 weeks as a matter of urgency and let them know just how much pain you are in. lWishing you good luck and really hope you get the proper medical help you need whether this is something else or ovarian cancer. Sadly, as we all know on this forum, here in the UK and the NHS we have to advocate for ourselves.
Hope this works. If not you I'm guessing you might be able to see a private oncologist (refererd by your GP) to do the scans and diagnostics, but would cost loads I'm guessing and still the hassles of getting referred back in to the NHS. That said, might be worth discussing how as last resort with GP if that could work, if my first suggestion doesn't work.
ps another thought is calling Ovacom help line or the Target Ovarian helpline who can also give advise. Really wishing you well and hope that things get much better very soon.
Thank you all so much for your replies, I will ring the Gp back Monday when they are open. I just can't get my head around why or how they can dismiss this when it's the official guideline and protocol? I'm absolutely in shock. I'm guessing the weight loss Is due to the fact that I'm unable to eat much as I feel so full and then the bloating increases which is putting pressure on my ribs which is very uncomfortable. I am hoping the GP on Monday can come up with some other solution 😪
You're very welcome, really hope your GP can get this sorted. Absolutely the mind blows how or why they would dismiss it given the offical guidliness, hopefully getting back in touch and putting it in writing will get someone in gear....I was initially dismissed and told by a doctor at hospital to go home and have a glass of wine (!) needless to say lot of red faces and trying to cover things up weeks later when we got to the bottom of things! Really hope you won't be uncomfortable for too long and this all gets sorted asap
Thank you, I'm so sorry to hear that you was initially dismissed. It's very frightening that these risks are taken. I know that it could be numerous things going on with me and maybe not anything malignant. But surely a scan would be better than taking a 15 month risk to rule out anything more serious. This situation is obviously so scary for any woman regardless, without this extra stress and worry x
Hi Mamma12345. The treatment you have received is simply well below acceptable. Urgent but a 15 month wait makes no sense. Over 40 CA125 and a tick list of symptons. I would ask what does it take to get 2 week referral. Where are you based?
Thank you for your reply, the GP did refer it as urgent suspected cancer through the 2 week pathway but it's the consultant who triaged the refferal has decided this is not to be and instead has put me on the non suspected cancer list, with as they told me a 15 month waiting list. I am based in Wales x
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.
6 month check up and elevated CA125 !
Brief Update
First Gynaecology Appointment 
CA125 raised
Feeling worried due to high ca125 level. 
