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Raised CA125 - routine 8 week ultrasound

Keepingfaith
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I would be grateful for any advice here.
 

16 days ago, my bloods were taken and CA125 was raised. The surgery called to make a phone appointment two weeks later with the practice nurse (Tuesday just gone), the appt was changed to a GP appt time. When I spoke with the GP, he had no idea about the symptoms I have been reporting since September and he was also looking at the wrong urine tests, I had to direct him to mY blood results, 

He said I needed an ultrasound to check my ovaries for cancer. I already knew this as I had been directed to the NICE patient pathways, I wanted to check that it would be an urgent referral as per NICE guidelines and he said that the Radiology dept would triage and decide if it was urgent.
 

Today, I called Ultrasound and they said the doctor had submitted a routine referral and the wait was 8 weeks. I explained about the raised CA125 and was told that ghe  Ultrasound should take place within two weeks and submitted as an urgent referral. I was told to call my GP and get them to make an urgent referral. After much calling and chasing, I was told by my surgery that another doctor had noted my concerns and forwarded them onto the referring doctor, who isn't in until tomorrow. I then receive a message from the surgery's online platform saying my ultrasound result was in!!!! I look at the message and apparently a doctor at my surgery has cancelled my ultrasound as 'the criteria wasn't' justified,'

So now I am sitting here 16 days after my blood test, worrying about ovarian cancer, in quite a lot of pain, looking at ringing my GP surgery again to find out what is happening with my so -called urgent referral.

Has anybody got any advice? How do I approach this with my surgery? 

  • Hello Keepingfaith

    I'm sorry to hear that you've been dealing with some ongoing health problems and that despite seeing your GP you've been given conflicting information but you're still no further forwards. 

    I'd certainly get back in touch with your GP surgery if you've not already done so. If you're not happy with the answers that you're given then I'd suggest asking to speak with the Practice Manager. You could also put your concerns in writing to the Practice Manager who will then have procedures to follow to make sure that you receive a timely reply. 

    I do hope that you have some answers and reassurance soon and that whatever the next steps are, that things settle for you soon. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hi,

    That's such an awful experience from your GP. They seem really incompetent. I have concerns about bloating, feeling full, etc- so I called the GP who text me the blood form for CA125 about 15 minutes after our chat. The referral for the ultrasound came through the post next day but when I tried to book they were saying 8 weeks too. I wasn't happy with the wait either so I sent an online consultation to my GP, basically saying I was extremely worried about ovarian cancer and would like the ultrasound to be rushed through as urgent so we can rule it out. The next day another GP called back and was so lovely and reassuring, he said I was absolutely right to want an ultrasound quickly, as that and the results of my CA125 would determine if it was indeed ovarian cancer. He text me my ultrasound referral after our phone call - rather than send in the post- and I'm getting an ultrasound on the 13th December now. 
     

    I would say call your GP again and don't be afraid to lay it on thick- just say you are not happy to wait 8 weeks, you need it to be sent as an urgent referral. If they are unwilling to do so, call back but ask to speak to the Practise Manager about a complaint. I used to be a GP receptionist so I know if it's a complaint you will get looked at straight away. Unfortunately sometimes we have to advocate for ourselves. At the end of the day the GP doesn't have to live with the cancer (if indeed that's what it is) so sometimes we have to be a bit of a nuisance. (Obviously without being rude, I always try to be polite but firm, and find that works). 
     

    I hope it goes ok. My CA 125 results are due back next week I'm hoping they're not raised. Did they tell you the number of your CA 125 result?

  • Offline in reply to loubeatrice

    Hiya, 

    Sorry for the delay, there has been a lot of toing and froing. Ultrasound rejected the original abdominal request as being unjustified and since then the secretaries at my surgery have been trying to get the pelvic ultrasound made urgent. However, according to a receptionist, there have been loads of unfinished tasks on my record, which means people have been trying to sort this, giving up and then leaving the task unfinished. So I made a complaint and a lovely doctor went back through my record and submitted two urgent referrals for ultrasound. This was last Thursday.

    It seems like there has been a lot of miscommunication within my practice as well as with u/sound. It would have been quicker to cancel the original routine referrals and create two urgent ones, but this must be done by a doctor and it seems the work has been delegated to the secretaries, who have no powers, except to try and get the Ultrasound secs to make my routine ones urgent. It seems they have been giving up and then starting again each time I make contact with the surgery.

    So I am back to square one...and waiting for ultrasound, again!
     

    Very good luck with your ultrasound tomorrow. X

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