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. 

Parents
  • 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. 

     

Reply
  • 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. 

     

Children
  • 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 . 

  • I intend to be busy Monday and hopefully will be better informed this coming week. It's difficult enough dealing with the illness and the financial hit without the unnecessary worry created by the lack of information. You are absolutely right, it's torturous. I thank you for your concern which is truly appreciated. 

  • Let us know how you get on and fingers crossed they get moving for you . 

  • Update 

    I dropped into Maggie's on Monday and spoke with one of the the Cancer Support Team who was, once again, great. Over the last couple of days she made some calls on my behalf one being to her McMillan Nurse contact. This nurse contacted Radiology and phoned me this morning to advise I have a CT scan booked for Tuesday morning. I am much relieved that I am now progressing through the system. 

  • Hiya . 
    That is very good news . I'm relieved for you . Like you say at least you know for definite you're in the system and things can get moving for you . 
    I wish you all the best and hope it all goes well . I have a results appointment tomorrow and am thinking I'll drop in to Maggies before I go for a bit of extra support . Anxiety is through the roof as I have no idea what I'm facing . 
    Good luck and let us know how you get on . 

  • Hi, 

    Thanks again for your thoughts and support. I am really thankful for the service that Maggie's provide. 

    I wish you the very best for tomorrow and please let us know how you get on. 

  • Update on my pot holed pathway 

    no further forward with liver lesion . No idea what it is so CT scan asked for . No surgery until we have an answer . Consultant said it would be very very unusual for this lesion to be connected to the primary at this stage especially when every other area is clear according to MRI and ultrasound . Started on endocrine treatment today which makes me a bit happier and more hopeful that this dementor will be annihilated before too long . Fingers crossed for a quick CT appointment and results to get things moving properly . Hope the next few days go quick for us . 

  • I was thinking about you today wondering how your consultation was going. I am pleased that you are feeling happier and more hopeful. I think your consultant's opinion is positive. I hope you don't have to wait too long for your CT scan. It's the long spells of nothing that I find difficult. It's a wee bit sad when the postman delivering news of a hospital procedure is a highlight. I look forward to my scan on Tuesday and hope that the node on my Adrenal Gland is nothing clearing the way for surgery. We both have a bit to go yet but I'm sure we will get there.