Lost between pathways?

I was referred under the 2WW pathway for investigation for lower GI colorectal issues. Colonoscopy failed so had a CT virtual colonoscopy as well. No colorectal cancer found, but a cyst was observed that requires further investigation. Discharged from the 2WW colorectal pathway. Told I need a trans vaginal ultrasound to investigate cyst. Colorectal nurse said she’d book that as an urgent (in 2 weeks) appointment. Called my GP they said there was nothing they would do until the results of the scan were back. But I’ve heard nothing from the bookings team for radiology. Meanwhile am having worrying symptoms - pain in hip/leg, stomach bloating, dull lower abdominal pain needing to pee all the time. I’m worried I’ve got lost between pathways what should I do? Tried calling colorectal nurse and PALS. No answer from either. Feeling frantic.

  • Hello POW

    I'm sorry to hear that you've had some ongoing health problems recently and that following your CT colonoscopy you're now waiting for an appointment with another team of specialists. It's understandable that you're feeling anxious. 

    You don't mention in your post how long you've now been waiting for the scan that the Colorectal nurse said they would refer you for. Hopefully, you will hear some news soon about the referral but in the meantime do try giving the colorectal nurse a call again. You could also call the PALS team. If you're still struggling to get hold of either the nurse or PALS then perhaps you could get in touch with the colorectal secretary to see if they are able to pass a message to the nurse or find out some information about the referral for you. 

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

    I hope that you have some news soon. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thanks for the post. I am at the end of my tether and no longer know what to do. Every day I am getting more ill, and now am having difficulty walking. I saw my GP on Monday and I’m now back on a 2WW pathway, but it seems like I have to start all over again. I waited for 17 days for an urgent Trans Vaginal Ultrasound but don’t know the results of that. Actually, I never seem to have results discussed with me. I have been trying to seek a diagnosis since the beginning of June, and just feel like my health is slipping away without anyone doing anything about it. I can no longer work but don’t know what to say to them - having tests is beginning to sound a bit weird after 4 months, and doesn’t explain my fatigue, pain and weakness. I feel like I’m seriously ill, but can’t get anyone to do anything about it. I’m feeling too ill to carry on battling at every single step. I want this never ending nightmare to stop.