high ca125 with pelvic mri

Hiya, i’m clearly suffering from good old scanxiety which i didn’t know was a think until now. 

i had a high ca125 test, i then had an ultrasound which didn’t show any masses or tumours. however consultant still wanted a pelvic mri as said could possibly be adenomyosis or endometriosis and if it was they’d ask my doctor to give me the coil. 

i was told my mri would be ready in 1-2 weeks due to being on the fast pathways. the report was ready after a week. however secretary said the consultant is only in once a week so will look at it the next week and send me a letter. she was very stern that i will not recieve a face to face or a call and it would be a letter with results and next steps and only that. i then called back a week later to ask what date the letter would be sent as he should have seen it. the secretary advised the consultant would like a face to face appointment to discuss the results and will not be sending it by post either now. i asked her why as she told me no matter the result a letter always gets sent first thats just how he does it. she said it was unusual but thats what he’s asked. she said i have not been discharged from the fast pathway. but the appointment ive been given is for 19th nov which is 6 weeks past the mri. 

i said the nhs time line advises to rule out cancer within 28 days but she advised they are very back logged and struggling with the amount of referrals. 

this has me worried as if it was something not sinister then he’d write a letter as normal as it would take less of his time as he’s obviously a very busy man. however i’m thinking 6 weeks after, it can’t be worrying at all!! but the back log makes me wonder if it’s sinister and the wait is just what it has to be?

can anyone share any experiences? 

Parents
  • Hi Kmorri and thank you for your post.

    I am sorry to hear about your situation and appreciate how difficult it is waiting to hear your results.

    NHS England has introduced a new target called the Faster Diagnosis Standard (FDS). The target is that you should not wait more than 28 days from referral to finding out whether you have cancer or not.

    This is part of a wider NHS England plan to focus more on the speed that someone gets their results and diagnosis.

    However hospitals are struggling to meet cancer waiting targets due to staff shortages and the impact of winter pressures on the NHS. Unfortunately we do hear about people waiting longer for their results.

    It is not necessarily true that only bad results are given face-to face. Different consultants or departments may have varying approaches to sharing results.

    Most consultants prefer not to disclose results over the phone or by mail, most of them opt for face-to-face communication, regardless of whether the news is good or bad. 

    It is reassuring that your ultrasound did not show any masses or tumours, and your consultant had already mentioned conditions such as adenomyosis or endometriosis as possible explanations for your symptoms.

    Even benign conditions require a face–to–face appointment to discuss treatment options, answer questions, or talk you through the next steps.

    Scanxiety is very real, and many people find the waiting for their results  harder than the tests themselves.

    If you feel your anxiety is becoming overwhelming, we often recommend visiting the NHS Every Mind Matters website or Anxiety UK for tips on how to cope while you wait for more information.

    If you have not already done so, you may find it helpful to seek advice and voice your concerns to the hospital's Patient Advice and Liaison Service (PALS).

    Please get back to us if you need any more information or support.

    It might help to talk things through with one of our nurses on the helpline. You can call for free on 0808 800 4040, Monday to Friday, 9am to 5pm.

    I hope you know more soon and everything is ok.

    Kind regards,

    Tina

  • thank you for your reply and listening to my long old rant! 

    yes i did think it would be a face to face originally! however after my mri his secretary made it very clear to me he only sends out letters with results and then if there’s a follow up needed he’ll send that appointment out with it. 

    when i asked her about this, she did say this was unusual for him, and that he’s asked for the report not to be sent to me before the appointment. 

    now if it’s a adenomyosis and endometriosis, which is what he knows we were expecting, and had already discussed treatment option for this which would be given at my gp then why do i need a face to face. why would i not be allowed my own results before then? 

    6 weeks for something possibly benign seems inhumane and unreasonable knowing i’m obviously worried about cancer as that’s the pathway i was put on. 

    unforutusntly pals said i would need a sar request which will take longer 

Reply
  • thank you for your reply and listening to my long old rant! 

    yes i did think it would be a face to face originally! however after my mri his secretary made it very clear to me he only sends out letters with results and then if there’s a follow up needed he’ll send that appointment out with it. 

    when i asked her about this, she did say this was unusual for him, and that he’s asked for the report not to be sent to me before the appointment. 

    now if it’s a adenomyosis and endometriosis, which is what he knows we were expecting, and had already discussed treatment option for this which would be given at my gp then why do i need a face to face. why would i not be allowed my own results before then? 

    6 weeks for something possibly benign seems inhumane and unreasonable knowing i’m obviously worried about cancer as that’s the pathway i was put on. 

    unforutusntly pals said i would need a sar request which will take longer 

Children
No Data