Still No Update from MDT

Hi Lulu13   I had a colonoscopy in October, where the tumour was sadly staring me in the face on the screen. I then had notification by mail of an MRI and CT scan within days , then....nothing for weeks. Like you, my hospital have a MDT meeting each Friday and I just missed one. I heard nothing on the following Friday but assumed that this was because the CT and MRI scans hadn't yet made it to the MDT team and that must have been true, because it was 3 weeks later before I was invited in to meet the surgeon. If you are seeing surgery booked for June 10th then something must have gone awry because you would get plenty of notice of that  I would say, phone the colorectal team first thing on Monday and really insist on being updated.You'l be fine, because you are here-among friends. We talk the talk but we've walked the walk too x

Hi Nevermind,

Thanks for your quick reply and for sharing your experience. The wait is like nothing I’ve ever experienced before. Today is the first day I haven’t felt shaky and sick in 2 weeks.

My doctor from my local surgery called me a couple of days ago to say sorry about my news, he asked me how I’m feeling and said that he is prescribing me some iron tablets as I’m anaemic.

I had my children in the car with me so I couldn’t really talk but he mentioned that I need to take the iron tablets to be strong for surgery and for any treatment afterwards. I told him I’m still waiting for an update from the MDT team.

Thank you, I will call the hospital again on Monday morning. Take care x

Hi Lulu13  this sounds really anxiety provoking, so sorry. I have found the NHS to be amazing but I do have issues with the app, having had things pop up there with no context or phone call.

I was v lucky as was called in the day the MDT met as there was a cancellation. As Nevermind says, there is usually a good gap before surgery. I too was anaemic so had 2 iron infusions pre op, so I would ask about this.

Good luck for Monday xx

Hi Arial88,

I had a text messsge this morning with a link to my hospital letter regarding my surgery but nothing else.

Thank you, I will ask about the iron infusions xx

Lulu13  this isn't how things should work, I feel you've missed out here. You ought to have had the MDT meeting then an invite in to discuss with colorectal surgeon about the surgery,tell you what scans show etc-but that hasn't happened? From what you say, the first you know about surgery is on the App and on that text link?  If that's the case then that isn't right. 

Hi Lulu13 

my OH had his colonoscopy back in September then scans -  after repeat biopsies 3weeks later we then saw the surgeon. He explained exactly what the next steps were. In OH’s case  it was inoperable as it was so his plan was Radiotherapy & chemo then 4 rounds of Capox to shrink tumour before surgery. 
But all this was explained by him and the Colorectal nurses who have been very helpful and supportive. 
As Nevermind & Arial88 have said insist on speaking to the colorectal team and you do have to fight your own corner. If you are not fully informed that’s not right !! 
good luck  we are all here for you x 

Bx 

Following my colonoscopy I was told that I would hear from the MDT either that Friday or the following Friday.

I went to get checked out at the hospital last week as my blood pressure dropped and I felt dizzy and shaky. The nurse sent an email to the MDT asking them to contact me asap due to my anxiety. They replied to the nurse to say they were going to have a meeting on Friday. The nurse called me to update me of this and I was therefore expecting a call at least following the MDT meeting.

That’s right, the first I’ve heard about my surgery was on the app. 

Thank you so much. I will phone again Monday morning and keep trying to get an update x

Oh Lulu13  I really feel for you. Whether a breakdown in communication or not this is just not right. There is all the stuff around consent for surgery which my surgeon outlined in person, it's just not appropriate to get this via an app or a link. Plus you need a full explanation of scan findings. 

I would be making my feelings v clear on Monday!

Best of luck xx

Thank you, it could only happen to me!

Yes, if I don’t make my feelings clear I know my OH certainly will x