How long did you wait?

Hi! Husband was 3 weeks after colonoscopy as he had to wait for histology to come back they weren't sure it was cancer. Saw surgeon and surgery was 4 weeks later. 6 weeks after surgery for more histology then another 4 weeks for chemo. 

Where are you at? 

3 weeks post colonoscopy, mdt met yesterday but we have no information from it until we see consultant on 10th September.

We got told by our GP it looks like it has spread, over a week ago ago, but not even had that confirmed yet.  So totally lost, stressed and frustrated that we have 2 more weeks to wait for any update on what stage/TNM his cancer is

Have you a CNS you could contact? Ours let us know it had spread prior to us seeing the oncologist.  Waiting is the absolute worst it has been all through this process. I hope you get some answers soon. 

Nope not been given a CNS, the only number we have been given is an answering phone and then we get a call back the following day, and we have been told they cannot give any information to us over the phone.

MJ x

That's rubbish. Could the gp chase for you? Or the colonoscopy team? We had had contact with them until we got handed over for surgery.  So frustrating for you. 

Just to add also that you may not get full staging until after surgery or treatment. We were given a provisional staging prior to surgery but this changed once they had the pathology back from the operation.  Has he had a CT?

I get that, and am ok with a provisional staging.  Tbh just any actually information would be useful!

Yep CT scan was on the 17th August, had a liver ultrasound the following day (organised before this pathway started) which saw several lesions and GP said it was likely to be the cancer has spread (which he told.us over the phone), but no info from the hospital to confirm or deny that

Not knowing must be so frustrating.  My husband had two lesions on his liver prior to surgery which turned out to be benign.  Unfortunately they picked another one up at his annual scan in July which they believe is metastatic so we have a two week wait to see the liver team. 

It sounds like you have done everything you possibly can. They will make a plan for him and you will feel slightly better once you know something is being done. In the meantime please try not to google too much. Been there done that and it didnt help! Please keep us posted and vent as much as you want. 

Hi,

At my colonoscopy I was told I had a 6cm malignant tumour, 6 biopsies taken. 3 weeks later I had my CT body scan, 3 weeks after that I was discussed at MDT and surgeon phoned me the next day. She apologised and had hoped that I would have been discussed the previous week, however, written report for CT scan hadn`t been available. I met with her the same week and also got my surgery date and my pre assessment.  She advised me that the tumour isn`t malignant at this time, I have high risk dysplasia, however, treatment still required.

Thanks for contributing.

We had the same with his mdt and the ct result not being ready in time, but haven't had the call from the surgeon. 

Glad that you had good news with it not being malignant, good.luck for your surgery.