Rectal cancer stage four at diagnosis

Hello Jules1000,

I haven't a clue what stage mine was at but the tumour was 13cm and the first attempt at a colonoscopy had to be abandoned as the route was blocked. Neither of the powerful laxatives they gave me before the colonoscopies worked. If you click on my name you should get an idea of the procedures that took place, but bear in mind not all patients are the same. The loop ileostomy before chemoradiotherapy (recommended by the oncologist) turned out to be a good move and it continues to work well. I was lucky, after surgery the team told me that it was successful and the adjacent lymph nodes were not affected. I look at things differently these days..........

Best Wishes

Dulac

Thank you Dulac. Was really good to read you have found the ileostomy works so well. Can I just ask if it took you long to recover from the ileostomy and if it was painful. How soon afterwards did you start chemo?

Best wishes 

Hi Jules1000. Sorry to hear about your diagnosis, but hopefully you can take some solace in the positive stories others share.

I'm awaiting my results on 30th January, but already know the tumour is "quite large" and they have me on the low fibre diet to minimise the chance of blockage. I can't imagine given that I'll be anything below stage 3.

I know how scary this can be, so stay strong - I've found the support on here invaluable, so hopefully it can help you through too.

All the best,

Rich

Thank you Rich for your kind words of support 

Hi Jules1000 

They are inclined to remain guarded until they see what response you have to chemo but after that their language can shift and you start to notice they are more positive . If you click on my user name you can read my mum’s journey from 2009 and she has just finished another ten months of treatment. It’s not updated as I  am still a little cross with it . But she has had lymph node involvement in her mediastinal nodes and they seem to have disappeared again with treatment. They never say cured and to be fair she never has been but she is living with cancer and is working round to year 15 .

They seem to prefer to plan surgery than risk emergencies. That way you also get your consultant and reduce the risks . People get concerned about the delay in chemo and in the beginning we were like that but now we don’t worry . In fact my mums recent cancer was discovered in September and due to her health at the time did not start treatment until February. Obviously you would not be waiting that long but just to give you some reassurance. 
Take care ,

Court 

That's a really inspiring story. Thank you so much for sharing it

Evening Jules1000,

The ileostomy was performed late in the day on a Monday and I returned home Wednesday afternoon. My stoma nurse was excellent and taught me how to deal with a stoma very quickly: sound advice that I still follow. No pain at all and a relatively minor abdominal wound from the surgery that healed quickly. I took things easy for a while just as the surgeon told me to. Having the ileostomy was the gateway to chemoradiotherapy, which commenced a few weeks later for five weeks (daily). Chemo amounted to taking daily tablets, with no noticeable side effects. After that it was about three months of waiting for the tumour to continue shrinking and then surgery was arranged to remove it. To be honest I didn't worry too much about the planned surgery simply because I wanted the tumour to disappear and it was clear that the surgical team and their support colleagues knew their business. The NHS was first class as far as I am concerned. Again, no pain regarding surgery just a general feeling within that some serious work had been done, although the procedure was carried out using 'keyhole' techniques which facilitated a quicker recovery. It took about twelve weeks to fully recover from that but I was on light duties well before then. 

Trust the experts as they have seen it all before. I hope that this helps you.

Dulac

Hi Jules,

I was diagnosed with upper rectal cancer Nov 2023 and had a temporary ileostomy as phase 1 of my treatment - consultant was concerned it could cause a blockage because of size and position. Also thought it would allow that part of my bowel time to rest and make further treatment more effective. Stoma nurses offered great support in hospital and afterwards. 

Phase 2 was the beginning of Jan 2024 - 5 sessions  radiotherapy to shrink the tumour. I’m about to start phase 3 next week - 2 weekly cycles of Folfox chemo for 12 weeks. 

I struggled at first knowing the tumour would still be inside me even after radio & chemo and did query the order of the treatment plan but now have complete faith in the experts on their tried & tested routines! The oncologist has already mentioned the op to remove the tumour (phase 4) could be as early as 6 weeks after chemo has finished. Depending on how successful the resection is, then I hope to have the ileostomy reversed - phase 5. 

Good luck with your treatment plan too!

AlbaH

Thank you so much AlbaH. That's really reassured me that it's the right way to go. Wishing you all the best for the rest of your treatment

That is really helpful and reassuring Dulac. Thank you so much for taking the time to reassure me