Waiting for MDT meeting, new to cancer

Hi and a warm welcome to the board from me. Yes this is unfortunately the worrying part but once you get a treatment plan in place then things will feel a lot better. You are in the system now and the ‘gold standard’ treatment tends to have each appointment within 2 weeks of the previous although whether they’re managing to meet that target at the minute? The MDT usually meets once a week to discuss treatment plans so once that’s been held then they’ll be in touch to tell you what’s been decided.

My first piece of advice would be to stay away from google - the information is out of date, often inaccurate and will only worry you more. You can ask anything you like on here. I’ll attach a link to a booklet that will introduce you to some of the treatments, terminology etc. but please try not to get ahead of yourself and worry about things that you don’t know if you’ll be having yet.

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf

My tumour was mid-rectal - 9cm in from the anal verge - and I had a temporary stoma which was reversed after my treatment finished. It is used to bypass where the bowel has been rejoined and to give it a rest and time to recover. I accepted it as a necessary part of my treatment but they will discuss it with you at your meeting. Please don’t worry about it too much. If you have to have one then we’ll help you cross that bridge if and when you get to it.

I was diagnosed as stage 3 with 2 lymph nodes affected in July 16 and had chemoradiotherapy followed by surgery followed by mop up chemo then my reversal and I’m currently cancer free. Bowel Cancer is very treatable nowadays - it will be a tough few months ahead so please keep posting and we’ll be happy to help you through it

Take care

Karen x

Karen you are the first person who I finally feel a connection too.  I have tears for the first time since this began (excluding telling my son)

My brain is working overtime and I am also on warfarin for life. This can't be altered to a different Anticoagulation unfortunately, I am 50.

How long was your treatment from start to finish?

Waiting for someone to tell me exactly what I have is wearing me down. Tired/can't sleep, I'm sure you know that one.

Thank you for your advice and sharing your story.  Loubie

Aww you’ve got me filling up now too! If you click on my name then you’ll see my full story although most people’s are a lot more straight forward! I developed lung clots during one of my hospital stays so I’m now on Apixaban for life but this was taken into account before my reversal operation - it will be nothing that they haven’t come across before.

Your treatment will depend on whether they want to shrink the tumour before removal in which case you’ll have chemoradiotherapy or you may go straight to surgery. The ‘chemo’ part of chemoradiotherapy is in tablet form and a low dose that is taken to enhance the effect of the radiotherapy.

Surgery can be open or keyhole - I told my surgeon to do whichever gave him the best results for removing the tumour and had open.

The bits they remove are sent off for testing. I had 2/17 lymph nodes affected so had follow up chemo to zap anything that might have escaped. 

Stoma reversal a lot smaller op although my surgeon said I ‘managed to make a meal of that one too!’ - I think it was said with humour?!

Jul/Aug16 - colonoscopy, scans, meeting with consultants. Start 5 weeks chemoradiotherapy 

Nov 16 - operation 281//, discharged 5/12

April 17 - start chemo

Jul17 - finish chemo

Mar 18 - Stoma reversal

Its tough but it’s doable. I decided that I was almost going to pretend that it wasn’t really happening and carry on as normal wherever possible so I carried on working part-time when I could, meeting friends for coffee etc. A lot of people hate being told to ‘stay positive’ but my consultant told me that they were treating me with a view to cure so that’s what I decided would be happening.

Happy to help when I can. I’ve sent you a friend a request so if there’s anything else you want to ask then you can drop me a line?

Take care

Karen x

Hi Loubie, I was picked up by the bowel test all started with my letter last February 2020, then I had a meeting on 9 th March, but didn’t get tested until June, because of COVID, was meant to have surgery, was offered an alternative of chemo tablets 25  days only week days not weekends finished last October. Had a complete response,. Now I’m going for another mri already had 2 , but having mri next Wednesday. I have been very scared the whole way through.  Like you I’m still not familiar with what means what. Lots of lovely people on here and the Macmillan line that I always say I phoned a lot. Good luck, and the waiting is the worst. Sending hugs xx

. Do you have any tips for as you are at a similar point?

Thanks

Karen x

Hi Loubie18, it looks like we're at a very similar stage. I've just had all my pre-treatment assessments, the last was a CT scan this Monday just gone. They brought all my results to the MDT the same week, which in my area (Mid Glamorgan) is held on a Thursday. A specialist nurse called me the same afternoon to give me a summary of the outcome of the MDT meeting and I will be having a face-to-face pre-op appointment with my appointed surgeon next week. I know each hospital is different in terms of their schedules but as Kareno62 has said, once you're on the pathway things should happen very quickly.

When my tumour was discovered during my sigmoidoscopy I made the decision that I was going to face just one challenge at a time and tick them off the list one by one. Projecting too far into the future would be wasting the emotional energy I need to get through each stage. Also to do everything I can personally to stack the odds in my favour of a good recovery by eating well (within the constraints of the low fibre diet I've been advised to follow) and generally following the preparation instructions of the medical team supporting me. As well as being practically sound it helps me to retain some sense of control over what is happening to me. 

I should also say I do have a strong Christian faith and it has helped enormously for me to know so many people are praying for me and I have felt upheld at a level I've never experienced before. Oh, and my dear husband with his mantra, 'One thing at a time sweatheart, you can't eat an elephant all in one go!'

Well, it looks like we're on this journey together! Hold on tight - they know what they are doing and we can do this!

Keep in touch

Deb

I was in your shoes early 2019, so feel for you. In answer to your question re bags, I didn't need one, though was marked up just in case. I now have very little rectum, but the join worked. It was a low resection I had. Depends on quite where it is, and what they find at the operation. Fingers crossed you hear soon.  Take care

Hi Nelly, thanks for your comment.  I wish you every success with your next MRI xx

Hi Deb, yes it appears we're at a similar stage, my consultant appointment is on Friday I know nothing more, I was called after Tuesday's meeting and given no other info.  I suppose we have a list of questions to make have you asked for any guidance on them?

This is the first time I have logged into my account after my post.  I needed to take a step back from cancer ...if that makes sense, it was overwhelming me.

Let's do this!!!!  xxx 

Hi Gemmary, if you don't mind me asking have you had any chemo or radiotherapy before surgery?  How are you now?

xx