Ca125 level raised, 15 month waiting list?

Hello all, 

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? 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. 

  • Sorry forgot to add, also been experiencing change of bowel habits since all this, alternating from diarhea to constipation. 

  • Can you request to see another GP and explain your concerns?  There are lots of places that will do private scans without a referral you just have to find the right one, but the point is that you shouldn't have to and the GP should be sending you for a scan asap. I'd push this and try and get a scan sooner. 15 months is ridiculous.

  • Thank you for your reply, I will be ringing the Gp back Monday to try and see if they have any pull over this. I just can't understand how they can just dismiss this without any further investigations, I really can't get my head around how? The worry is hotrendous. 

  • Definitely do phone them and request to see another GP. Just for the raised CA125 you should be having a scan surely? I wonder if it's based on postcodes or something as my GP will refer you for a scan for pretty much everything these days.

  • This is exactly what I have read as per the guidelines, that even a raised ca125 alone warrants an urgent scan. In all fairness the gp did refer me through the two week pathway urgent suspected cancer, but the consultant who triaged it has decided it's not to be put on the urgent suspected cancer list and instead to put me on the 15 month waiting list for a consultant. I can't understand any of it,