Waiting for results

Hi, this is a bit of a long one!

So 5 months ago I had an ultrasound due to some prolonged blood and protein in my urine, came back all clear and my GP sent me for a CT scan as I have a family history of kidney stones. Well, my bladder/ kidneys were fine but they found a mass on my pelvis wall, the radiologist suggested that I had an MRI scan to identify what the mass was. My GP sent me for MRI the following week, telling me how specific an MRI scan is and how it will give great information as to what the mass was. I had the MRI and got the results back a few days later, told that it was in the position of a lymph node but was larger than a normal one and did not respond to the contrast as a normal lymph node would. Basically they don’t know what it it. It is between my ovary and a vein. They suggested I had a CA125 blood test and repeat MRI in 3 months. Had the CA125 test (I was reluctant as I know CA125 is only raised in about 50% of ovarian cancers and therefore was not happy that this blood test was the only thing ruling out cancer) At this point no one had mentioned the possibility of cancer to me. Anyway my CA125 came back normal and I was told to call in 3 months to have a repeat MRI. I expressed my concerns but they just told me to wait. Fast forward 2 months of anxiety and I move back from uni and so register with a new GP/ NHS. Waited 3 weeks for a GP appointment and this doctor said he can see my medical record but can’t find where I have been referred and told it is not cancer, he informs me that any unidentified mass needs to be further investigated and was very surprised that I hadn’t been referred already, and so refers me on the 2 week wait for GYNAE cancer. I wait 2 weeks for that appointment and the gynae told me that it may be cancer but i have been referred to the wrong department because it has nothing to do with my ovaries/ any gynae. So she sends me for my MRI (a week later). I am now 1 week since my MRI and i have not heard any results. I have chased up with my GP practice who told me results can take up to 6 weeks and if there isn’t anything of concern I won’t hear anything, which is ridiculous when they’ve said it could be cancer!! I am extremely anxious and concerned because, although i work in the NHS, i have very little trust and faith in it. I am concerned that it has been 5 months since this mass was found and nothing has been done. A few years ago I was very poorly and my concerns were not taken seriously, I was diagnosed with anxiety and told my pain was in my head, but i was really suffering from a ruptured cyst, appendicitis and internal bleeding- sepsis and few surgeries later i made a full recovery but I am concerned about slipping through the net again. Any advice or anything would be greatly appreciated 

  • Hello Jadew02

    I'm sorry to hear about all that you've been through over the past few months and that you're now waiting for the results of your most recent MRI before any next steps can be taken. We know that for many people this period of waiting and uncertainty can be difficult and I can understand that with the delays you've had and your previous experiences, you are feeling very concerned about things. 

    It's worth getting in touch with the hospital's PALS department to ask about the length of time you may be waiting for the results of the most recent scan. Whilst it sounds like the recent referral is moving forward quite quickly in trying to get you a diagnosis, the PALS team may be able to help give you some reassurance regarding time frames. 

    Don't be afraid to get back in touch with your GP if you have any further worries or want to discuss your concerns with them. Whilst they are also stuck in this period of limbo waiting for information, it sounds like they've been supportive and proactive in organising this referral for you. 

    If you'd like to talk things through with one of our nurses for some advice and support you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

    Do keep in touch and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator