7 weeks since diagnosis

Hi Lmo

i wanted to say hello. My treatment plan was different I was close to blocking so straight to surgery for me after the agonising tests and wait like you I just wanted to fight this horrid thing 

There’s lots here that have had the same treatment as you and they’ll be along very soon. I read amazing results from the people here that have had treatment first. The treatment plan is individual to suit your needs. 

Take care 

Hi Lmo54 and a warm welcome to the board. Yes a recent trial has shown that having radiotherapy and chemo before the op rather than after had better results so it has been adopted as standard practice. 
I’ve attached a link below to a post that we started with top chemo tips. 
https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/221768/chemo-care-top-tips--

Chemo can be tough but it’s doable and there are lots of pills and potions to help you manage any side effects. Make sure you have some cream to keep your hands and feet moisturised - my nurses recommended Aveeno with Shea butter - and use gloves when getting things out of the fridge or freezer - chemo gets right to your nerve endings so you might find that you get a bit of a tingle when touching anything below room temperature. Make sure you mention any problems to the nurses and they will help you.

I was stage 3 when diagnosed in 2016 and had 2/17 lymph nodes affected so had follow up chemo as this was before the Rapido trial. I’m currently still cancer free.

Glad you’ve felt ready to join the board - we’ll be happy to help and support you through this

Take care

Karen x

Morning- I was diagnosed after a colonoscopy 4 weeks ago. A total shock as I had no symptoms, but this forum is fantastic. What I have learnt is do not google anything, trust your medical team and stick to the plan. Also, everyone has very different recovery  journeys, so it can be difficult to compare. Stay strong mentally and physically, as treatments have moved on and bowel and rectal cancer can be managed -they know so much about the issues.

I have a small tumour high up in my rectum (which has been detected early) which doesn’t need any pre-treatment. I am going for robotic surgery on 5th September to have it removed and I want to ensure I present myself to the medical team in god condition, so I am keeping myself fit. Whilst my cancer has not spread and no lymph nodes are involved, I will have to wait until the histology tests are done on the tumour before they decide on next steps.

I am over the initial shock and just concentrating on getting through the next steps. Good luck with your recovery.

Thank you, really helps to hear others stories. Hope you continue to be well x

Thank you so much for all the information, as much as people are very kind and want to help no one knows unless they've gone through it do they? Great tips, I'm making myself a shopping list before next week's first treatment so I have my gloves, moisturisers etc all ready. Excellent news that you are still cancer free! Best wishes x

Thank you for your response...wishing you all the very best for 5 sept, good luck!

Hi Lmo, 

Just came across your post and wanted to say hi! My husband is currently in exactly the same with as you were when writing this, we ar in fact going tomorrow to hopefully get an idea of his treatment plan.  I hope you are doing ok on your journey 

x

1. Hello Ea1, sorry to hear about your husband, how is he coping with the news?  I hope you get some answers today and he will feel better once he has the treatment plan, your survival instinct kicks in and you just want to get on with it. I was doing very well till my picc line caused a clot so now I'm on daily injections into the tummy for 3 months on top of the other meds to break down the clot before the picc can be removed....not part of the plan but another hurdle to get over. Sending love and best wishes to you and your husband...good luck with today xxxx

Hello lmo. I am in v similar position. Diagnosed with 4cm rectal tumour in April. Scans showed ‘local lymph node involvement’. I had a week of radiotherapy and have just completed 4 x cycles of capox. Scans about 3 weeks ago showed what the oncologist described as ‘marginal’ response to treatment. That really upset for some reason. I’m just waiting now to find out date for surgery - bit like getting blood from a stone I’m finding! I’ve been told I’ll need a permanent colostomy.

I wish you all the very best with your treatment. I had what I was told was a bad reaction to the radiotherapy (local pain, bleeding and was almost unable to walk). The last cycle of capox has also floored me - most of the last week I’ve been almost unable to get out of bed and my hands / feet are agony! Sorry to moan - I am massively grateful to be getting treatment and am doing my best to focus on the end goal xx

He is doing ok thanks, finally got some answers and like you say having a plan in placed has certainly made me feel a little more a ease with it all (if that’s even possible).  His is also upper rectal like yourself but also in the same position as Moirq too, in that they are going for radio and chemo beforehand! Next big hurdle for us is how to tell the children before he starts the radiotherapy, although we have been told that may take up to 3 weeks to organise So we have time to research a way of navigating that one! 

Good to hear you are on track albeit with a few bumps in the path, wishing you all the best as you continue to recover xx