First consultant appointment.

Hi Daisy May 090819. Please try not to read too much into this. It may be that the scan results have come back more quickly than expected or that the consultant has booked a weeks holiday so they’ve brought your appointment toward. Whatever the reason you will be meeting with the consultant so the sooner the better.

They will probably discuss the scan results with you and give you a preliminary staging. They’ll then tell you what they consider to be the best course of treatment and an idea of what to expect.

It’s a good idea to take someone with you to the appointment as 2 pairs of ears are better than one and I found I was thinking about what they’d said and then missing the next bit. You might also want to take a pen and paper with you to jot down some key points and also any questions you may have. 

You may want to ask if there is any spread/ will you need a stoma/ are they treating with a view to cure/ is keyhole surgery an option/ 

A Colorectal Nurse was also in my meeting and then she sat with us afterwards and went through it again and asked if we understood. 

After the meeting then you’ll know what you’re up against - it will be a tough year but break it into stages and deal with each lot of treatment one at a time.

Please let us know how you get on - we’re all right here behind you 

Take care

Karen x

Hi Daisy May

Going from my own experience you get the results from the CT scan which tells you whether they think it has spread either to distant organs (lung/liver usually), lymph nodes or hopefully the best result which is no sign of spread. They may then let you know if they need an MRI scan which gives them a more detailed picture of the tumour and any additional tests. Depending on the size and location of the tumour they may want to do the standard chemo/radiotherapy for five weeks to shrink it and then do surgery or go straight to surgery if they think that they can get clear margins of unaffected bowel to rejoin. They also normally give you some idea of the op they hope to do and if it requires a temporary stoma while it heals, a permanent stoma or no stoma at all. You get a lot of information so it is usually best to take someone with you who can listen as well, and fill in the bits that you missed if you are in shock. You also get to meet the specialist nursing team who give you contact details for any additional questions you think of afterwards. If you have questions, writing them down can give you prompts but it is hard at this stage to anticipate the info you need until you find out the basics that apply to you.

I found this appointment the most important one as you really get an idea of how serious it all is and what you are letting yourself in for. I walked out partly in shock and partly relieved (I needed a temporary stoma but it hadn't spread to liver or lungs). This is where the ball starts rolling faster and you start to get your head round it. I got rough timelines of what and when and this made me feel much more in control somehow. You are nearly at the end of the worst bit.

Also bringing appointments forward doesn't always mean it is bad news. Often it means that they have the results, a treatment plan has been discussed and so they want to fit you into the nearest available appointment. The scan results can take a while to come through so they might allow a bit longer for your first appointment and then bring it forward if it comes back quickly and a decision has been made.

Good luck

Nicky