NHS pathway and diagnosis?

Hi Monica

Welcome to this friendly place no one wants to be. I have found it invaluable  

I’m 67 too. Diagnosed 21st Jan at colonoscopy. MRI and Ct following week. MDT 2nd Feb. Colorectal consultant 3rd Feb. My hospital was very fast. Large ulcerated mass identified at 10 cm from anal verge. It was confirmed as T2NoMo. 

I was offered surgery - possibly stoma or chemo radiation at the specialist cancer hospital an hour away where they had a large radiation centre  . I opted for chemo radiation to shrink the tumour as it meant I still had surgery as a back up. 
I meet the oncologist at the other hospital on 16th Feb and started treatment on 5th March. Completed 5 weeks with oral capecitabine. 

Extraordinarily lucky to have had fast treatment. Less than 3 months from diagnosis. Now I’m waiting for 8/10 weeks for a review MRI. 

How long it takes does seem to vary by hospital. 

Staging happens after the scans. MDT meeting includes all relevant medical personnel. My oncologist although based at a different hospital attends my local hospital MDT meetings virtually! Their recommendations were discussed with me by the colorectal surgeon. 

I had no spread so can’t help regarding the lungs. Rectal cancer is very slow growing. I was told I’d probably had it for years before my symptoms started. Don’t worry about the waiting time although it is an anxious period. I felt in control once I had a treatment plan. 

Hope this helps 

Thank you so much for the response! 
It is her MRI week this week and I do hope we get some clarity.

Your response have been really helpful.

i hope someone can share their experience about advanced cancer here and their journey. 

bless you all!

Hi Monica1234 and a warm welcome to the board from me. You’ve had a great reply from Salvia and my reply should bump your post back up to the top of the board.

Ive attached a couple of booklets - I was given the Pathway one at my first appointment and then 1 about advanced cancer

https://bcuk.adidocdn.dev/Publications/Bowel_Cancer_UK_Your_Pathway_V10.1.pdf

https://bcuk.adidocdn.dev/Publications/Bowel_Cancer_UK_Treating_Advanced_Bowel_Cancer_Booklet_2025.pdf

Initial staging can be given after the scans and MRIs are back but some surgeons do not like to as it may change after treatment? Official staging is given after the tumour has been removed and analysed by the path lab

The MDT usually meets once a week so once all the information is available, your mum will be discussed and a treatment planned decided on. She will then be given an appointment to go in and discuss.

Yes I would ask for clarification on the lung nodules and whether they are cancerous and requiring treatment. The something in the liver may well turn out to be a harmless haemangioma - these are harmless cysts and are very common - most people go through life being none the wiser unless they have a CT scan.

If they suspect lymph node involvement then chemo may well be suggested before surgery. If the tumour is low down in the bowel eg. Rectal then chemoradiotherapy may well be the first option as it helps shrink the tumour to allow it to be removed with clear margins 

Hope this helps

Take care

Karen x

Hi Karen, thanks so much for the info. Im going to save this. Weve not been given any leaflet yet, nor on the first appt. when they discussed the results. 

Youve mentioned:

“Initial staging can be given after the scans and MRIs are back but some surgeons do not like to as it may change after treatment? Official staging is given after the tumour has been removed and analysed by the path lab”

-the colorectal surgeon didnt mention surgery or removal of tumour, but mentioned referral to oncologist for chemo.

Also, when they hopefully discuss her case next week’s MDT (tue)  as all MRI scan will be done this week, hopefully, is she likely to get a call from the colorectal team or oncologist to dicuss? 

ive tried to contact the hospital’s Macmillan nurses but to be fair it was a friday last week and any non urgent call is given 48-hr response.

you all have been really great and supportive.

my mom was very anxious today with MRI appt. So i was inside with her but she seemed determine to fight this!

thank you allx

Hi Monica1234 

The mass will need removing at some point but they’re maybe talking things through one step at a time? 

It’s nearly 10 years since my treatment so I may be a bit out of date with procedures but I was given an appointment to go in and discuss the MDT results. To be honest it’s better to talk in person rather than on the phone. I was told there was no spread to other organs then switched off for a bit as they carried on talking. Luckily I had my hubby with me and we were both trying to jot things down. After my meeting with the surgeon my allocated colorectal support nurse went through it all again (and gave me the booklet) to make sure I understood everything.

Back then any lymph node involvement was dealt with by chemo after the op but it’s since been decided that the patient is in a better position health wise to have it before. 

Hi Monica 

My dad has rectal cancer spread to liver so i am able to share a little bit of information with you. 
When you have spread, they dont want it spreading any further so they put you on chemo for so many cycles then usually around the 3 month mark scan and check the progress. 
If then the chemo shrunk the tumours then they would offer surgery to the liver lungs, recover from that then surgery for the rectal tumour.

If the liver and lung nodules in your mums case turned out to not be cancerous ( because you can have benign cysts on both) they would probably offer her chemo/radiotherapy combination and this can alone eradicate the tumour, if it didnt then surgery. 

She will have all scans,MDT maybe 2 weeks later,  then be sent to a colorectal consultant which will discuss findings. 
she will then be sent to oncologist who will discuss chemo or radiotherapy etc. 

Nearly always with rectal cancer they shrink first . Any more questions you need to know just ask ️

Hi,

thank you so much for this.

im starting to feel at more ease with understanding pathways.

I really hope she’ll be offered treatment. Our biggest fear is being told that nothing more can be done, especially when treatment hasn’t even been tried. Is that even likely? I know stage 4 hasn’t been confirmed, but from what I’ve seen on the Macmillan forum bere, even people with stage 4 disease have been offered some form of treatment.

thank you once again

Hi everyone,

We had a call today from the consultant. The lung scan has shown some small spots, and the radiologists are concerned. Mum is due to have an MRI of her liver this Friday.

From what we've been told so far, it sounds likely that this may be stage 4, We’ve been asked to come in that day to discuss the findings and the treatment plan.

It sounds as though chemotherapy is likely to be recommended.

after tuesday, is anyone able to share their experience on waiting for oncologist appt. Then commencement of treatment?

I wanted to ask if anyone has experience of starting chemotherapy privately because of NHS waiting times, and then transferring back to NHS care once an NHS treatment slot becomes available. Is this something that can be done smoothly, or are there potential issues with continuity of care or delays in transferring treatment?

Any experiences or advice would be greatly appreciated. Thank you.

Hi Monika

Im sorry to hear your mum has spread to her lungs, this is the most scariest time of the journey but it does get easier. 
Having spread to lungs does make her stage 4 , but stage 4 isnt the desth sentence it once was years ago and there is always hope. 
Have they said there is going to be a long wait? Ive no experience of going private but once my dad got his oncology appointment he started chemotherapy 2 weeks later. 
The initial disgnosis is hard but does get easier once you have a plan. 
She will more than likely be placed on a chemotherapy called FOLFOX every 2 weeks , which my dad has found very do-able. 
Will be thinking of you both Friday x

Hi was reading your story I was diagnosed  with rectal liver and lungs cancer in October 25 was told this was inoperable as stage 4 and spread I started my treatment 4 weeks later after having port fitted. I have infusion at  christies then come home with pump which takes 48 hours. After six treatment I had ct scan and was told all tumors had reduced slightly so carried on with the treatment had a further six and have now been told this week as I tolerate the treatment really well and my tumor marker are down I can carry on with the treatment Treatment usually starts quickly after your oncologist appointment so would wait until you see them before making a decision to go private as that could add waiting time to change over.

Hope everything goes well at appointment