Worried about time it is taking to be treated.

I contacted my GP in September with abdominal pains. I had bloods done then a Qfit and in mid October was advised he thought I may have bowel cancer and was referring for urgent double scope which would take approximately 5 weeks. We scraped the money together to go private and was diagnosed with a moderately differentiated caecal adenocarcinoma on 5th November . My GP then referred me to the colorectal cancer pathway.

I had a CT scan early December and was advised on Christmas Eve that there was a  node on my Adrenal Gland and was being referred for another urgent scan which would take around 2 weeks. When 3 weeks passed I called the nurse who told me she would refer me again which will take around another 3 weeks.

It is now 11 weeks since diagnosis and I am still waiting for scan of my Adrenal Gland with no sign of treatment starting. I am worried sick that by the time they start it will be too late.

Is this time scale normal? Am I right to be concerned?

Any guidance would be greatly appreciated. 

  • Hello Jock

    I'm so sorry to hear about the delays you're experiencing with tests and appointments at the moment. It's no wonder you're feeling concerned about things. 

    I'd suggest getting in touch with your hospital PALS department. It's their role to offer advice and support and to help resolve concerns and problems. 

    I do hope that you have some positive news soon. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi Jenn, 

    Thanks for your reply. I had a look and unfortunately there is not a PALS service in Scotland. 

    Kind Regards, 

    Jock

  • Hi Jock

    Sorry for giving you unhelpful information. I wasn't aware that there's not a PALS service in Scotland. 

    I've had a quick look online and there does seem to be a Patient Advice and Support Service (PASS) and I wonder if they might be able to give you some help to get this issue resolved. Alternatively don't be afraid to give your hospital complaints and feedback department a call. It might be a nudge for things to be sorted. 

    I hope this helps. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Thanks Jenn.

    At the moment I feel like I have been abandoned. Throughout this entire time, from phoning the GP surgery because of abdominal pain in September to now, the only doctor I have seen is the one I paid to carry out the colonoscopy.

     

  • Hi Jock

    I am sorry to hear that you feel this way. Do give either PASS or the hospital complaints department a call. Hopefully they will be able to get things moving for you. 

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

    Keep in touch and let us know how things go. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • I would go back to my doctor and get him to expidite my appointments things are taking longer at the moment but scans are still being done. Last Christmas l had a colonoscopy on new year and saw a gynaecology oncology surgeon in January, , You could contact the nurse that referred you to see if they can find out why you are still waiting, The surgeons secretary was really helpful and contacted the surgeon for me and got me a date for my surgery . 
    l hope you have your scans soon with good  results, 

    susie

  • Hi Susie, 

    I am going to phone the nurse on Monday and see if I can push things. The scan of my Adrenal Gland seems to be holding things up. I won't get a surgery date until that has been done. I am struggling a bit now and feel on a downward spiral. Hopefully I can make some progress next week. 

    I wish you well with your surgery. 

     

  • Hiya 

    I've been reading you're posts and you're situation resonates with me . I'm in Scotland as well and although I'm fighting a different battle to you I agree that the speed of service /treatment offered is soul destroying . Not to mention communication ! From little to none , to completely wrong information given . No wonder mental health issues are spiralling and it's not just because of covid . 
    There just doesn't seem to be the help when people need it most . It's torturous . 
    I'm really feel for you and it's so difficult to know where to go when you feel abandoned , but definitely don't give up .

    Get in touch with the hospital  complaints department and don't let it go until you get answers . 
    Here if you need a chat or a rant .x

  • Hi Goingbonkers, 

    Thanks for that. I have just written an email which I am going to send to whoever I think is relevant. I will go to xxxx Hospital who were very helpful when I was first diagnosed. I will speak with the colorectal nurse. I don't know what else I can do. My GP has been worse than useless offering no support whatsoever. Goingbonkers is a great name by the way. Says it all really. 

  • it does indeed . Mind you I'd be banned from every site if I chose the name I really wanted . 
    Definitely send the email because they are obliged to start investigating . Hopefully the nurse will be able to shed some light as to what's happening too . I must admit I've been making a bit of a pest of myself (in a controlled way ) but it's the only way I can milk any kind of info out of the team involved in my care . I really hope you get answers soon and your treatment starts as quickly as possible . Always here with an open ear if you need it .