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. 

     

  • 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

  • Hiya . 
    Absolutely fantastic news . I am so pleased that you're recovering well and that the surgery was successful. I've been thinking of you and have kept my fingers crossed all went well. 

    That's one thing ticked off and once the path report comes back you'll know the next stage of the plan . I found my mental well-being improved significantly after surgery and felt most of the time that whatever else came my way I could cope with . 
    It certainly sounds like they're taking good care of you and it's the best place to be just now even though you've been stalled a bit . It will be good to get home though ! 
    I'm doing ok thanks . Had Onco appointment last Wednesday and had my planning CT for radiotherapy today . The staff are lovely and  I start a 5 day course on 9/5. I'm hoping  that there won't be any more curve balls thrown in and I can just concentrate on recovering both mentally and physically properly . Your news has totally lifted my spirits though and I'm feeling really positive for both of us now . 
    keep in touch and let me know how things are going for you , and thank you for posting tonight . With any luck when you post again you'll be further on in your recovery and heading for home . 

  • Hiya 

    thank you so much for your support . Both of us are further forward now and going through our treatment . 
    this forum is a great place to voice our concerns and give support to each other as well as gain much needed info . 
    hope you're doing well too x

  • It's been nice seeing  you both check in with each other, it's funny how friendships can strike up,  may your recoveries be swift and both of you  making mischief soon. Cheering you on. 

Reply Children
  • Hi, 

    I have been wondering how you are doing as it’s been a wee while now since I last posted.

    I have had some ups and downs over the past few weeks however I am slowly recovering from my surgery. I did not want to update until I had some feedback from Pathology. I had a call this morning from the Colorectal Nurse and it's all looking very promising. They managed to remove the whole tumour along with 30 lymph nodes and some blood vessels. She said this was a really good number of nodes for testing purposes. There was no evidence of spread to the nodes. There was some indication of spread to the blood vessels however they are confident this was contained to the blood supply to the tumour itself. The good news is that there will be no need for chemotherapy.

    What I find a bit strange is that I thought I would be elated at such good news but I am not. I don't really know how I feel. I think maybe that because the past 6 months has been so difficult that right now I just feel kind of drained. I was overcome with emotion when I came off the phone and I cried.

    It would be nice to hear how things are with you.

    I would like to thank Petrolrainbow for your kind words and apologise for not responding at the time of your post. As you have observed finding support from someone who can truly empathise with your situation is priceless.