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. 

  • Hi Jock

    Thank you for your kind thoughts and I'm sorry you're no further forward . It's a terribly distressing time . Have you got an appointment for the echo results ? I just hope that they get going very soon for you and get a final treatment plan in place . I'm glad I've given you a wee lift though although I know it's not the ideal . 
    when you get more news let me know and I'll be hoping and praying it will be very soon . 

  • Hi Jock 

    I've  been thinking of you and thought I'd message to see how things were with you ? I hope you're further forward with your treatment and doing well . 

  • Hi, 

    Thank you for thinking about me. Things are now beginning to move. From mid March I have been trying to get some answers. Last Monday I had a call to tell me I was pencilled in for surgery on the 14th April. She told me I would need another CT scan before this. I had a call on Tuesday from the Consultant's secretary saying he wanted to see me on Monday 4th. I had a call on Wednesday to tell me that surgery was being moved forward to the 12th. So things are now moving. I don't think I could stand this any longer as I am now in constant pain. So I see the consultant tomorrow morning and I should have a clear picture then. I will let you know how I get on.

    I was wondering how you were. Have you had results from pathology? 

    It’s really nice to hear from you BTW. 

     

  • Hi 

    I am so pleased they are moving more quickly now . It's been a long time coming . Good luck today with the appointment and I hope you come away with a clear plan of action for next week and beyond . 
    I'm doing ok thanks . Path report was good although there was another extra weeks wait to make sure the 4th margin was clear , which it was . No lymph node involvement which was a relief . I've an oncology appointment on the 13th to plan the next stage of treatment so will see what is said then . As far as I'm aware I was stage 2 grade 2 with low risk of recurrence , so all in pretty positive . Everybody keeps saying I must be really happy but if I'm honest I don't actually know how I feel . It's still all very surreal and strange . 
    Let me know how it goes today and fingers crossed you get definite dates and times to get going . Pain on top of dealing mentally with the actual illness is so debilitating it takes great strength to keep going and come out the other side . 

  • Hi, 

    I am really pleased to hear that your situation is sounding positive. I can empathise with how you feel. 

    The consultant today explained the risks of surgery. Given my other health issues the chances of not surviving the surgery increases as does the liklihood of complications. After surgery I will spend a couple of days in HDU before step down to the ward. If all is well I should be home after a week. I have a couple of pre - op appointments this week and a scan on Monday. I have been assured the Radiologist will look at and report right away. He has assured me that there will be no further delay.

    The tumour will be removed with a bunch of nodes and it will be another couple of weeks before I know what further treatment may be required. 

    I find it all rather daunting and came away feeling quite sick. I have never been good with medical issues.

    I truly appreciate your support. 

  • Hiya

    i am really pleased that they have assured you that there will be no more delays and it sounds as if the consultant has been pretty thorough in giving you all the information they can at this stage . 
    The thought of surgery is pretty daunting I know but I'm sure they will give you the best of care and get rid of badness. Fingers crossed the path report is positive and then you'll know where you are with the rest of the plan . 
    The main thing over the next week is to rest up and try to settle your mind as much as you can . It's been a hugely worrying time for you but now you're almost there the surgeons and care team will make sure everything goes to plan and you'll be on the road to recovery as soon as possible . From what I've seen they don't hold back once they get going so that's very reassuring . 
    good luck with everything this week and I'll wait to hear how you get on  with surgery when you're able . 
    (Ill post next week to wish you good luck again though )

  • Hi, 

    Thank you for the morale boost. It is likely that there will be radio silence for a week or so but I will let you know how things are when I am able. 

    I have full confidence in the surgeon. He was brutally honest yesterday which was appreciated as I know what I am facing. There are some things he won't know until I am anaesthetised which will determine how he proceeds but I now know what his options are. 

    Take care of yourself and I will catch up with you when I can. 

  • Good luck for tomorrow Jock . Hoping all Goes well and recovery is quick . Will be thinking of you and sending positivity your way . 

  • Hi, 

    Thank you for your kind words and apologies for the delay in replying. I have had my surgery which was successful. They managed to remove all of the tumour and it will be another week or so for the pathology results. I am still in hospital and making progress towards my recovery. Hope to be home sometime soon. There are some things that I have to achieve before they will let me leave but it should not be much longer. It has been a bit of a challenge both mentally and physically but I am feeling positive. I don't see the stoma nurse until tomorrow as she has been on holiday which has been a slight impediment to my progress.

    How are you? Have you had your oncology appointment?

    Thank you once again for caring. 

  • Just read this thread and so sorry about the terrible delays you guys have been facing. Hope.you recover well and are back on fine form again soon x