So scared of the unknown

Hi not sure whether I can help or not but I had an extended right hemicolectomy- initially they said to be the tumour was T2 /T3 but after histology they told me it was in fact T4a and I had 5 lymph nodes affected so very similar to yours. I cried when I had the call as the grading of the tumour scared me. They were very reassuring and advised me I would need 8 cycles of  CAPOX and that this was mop up chemo for any stray cells. So I very much understand your worry but hopefully your oncologist will be saying similar things. I found the colorectal nurses the most reassuring but when I saw the oncologist I just felt a bit hopeless - I think as they just ran through the meds and didn’t really know my case to well or understand my concerns. They also used phrases like the surgery had a curative aim and the chemo is sort of belt and braces. I hope that helps to some extent! I know every case is different but I also know of another lady who had a T4a tumour but no lymph nodes and she had the oral chemo for 4 cycles after the op. Wishing you all the best - feel free to message if you have nay questions. I’m sure you will find plenty of support in this group xx

pS - I also have a strong silent type partner! I know he feels helpless so it’s really hard on them too x

Thank you for taking the time to reply, I really appreciate it.

I think as good as the medics are, (and I agree about the colorectal nurses - mine have been brilliant) forums like this and the wonderful people on them, are so so important, because everyone here has a story and experience to share, having been touched in some way by this awful, devastating disease.

I just need to get Monday over with I suppose, because I'm that type....give me the facts so I know what I'm dealing with.  I'm currently putting 2 and 2 together and coming up with 78, so I need all that details, not just some. 

It's so wonderful having this safe space to vent our emotions and seek and offer support.  I feel very much reassured by your story and kind words.

I wish you all the very best.  I will post an update after Monday....hopefully with positive news.

Sending hugs xx

Hi Scooby25 Hopefully I can ease you gently out of the rabbit hole so hold into your ears! T4 is not stage 4 - it denotes how far the tumour had gone into the various layers of the bowel wall - see link below 

https://www.macmillan.org.uk/cancer-information-and-support/bowel-cancer/staging-and-grading-of-bowel-cancer

N2b means that cancer cells have been found in 7 or more lymph nodes. So yes the tumour has been removed but you will probably be recommended to have chemo as the belt and braces final stage of treatment. I like to compare it to a dandelion - you’ve dug it out ( tumour removed) but you’ve found a few fluffy clocks in the soil (lymph nodes). You think you’ve got them all but give the area a good blast of weed killer (chemo) to be on the safe side.

Chemo can be tough but sometimes the thought of it is worse than the actual experience? There can be side effects but there’s also lots of pills and potions and options to manage them. I can link you in a top tips post once you know which chemo you’ll be having (possibly capox/xelox?) and this is also a good post

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/292722/capox-journey

Hope this helps calm the nerves a bit and please keep us posted?

Take care

Karen x

Hi;

yes do let us know how you get on - I ageee it’s always good to hear other people’s stories particularly if there are some similarities. I would be interested to know what your oncology team says as there also seem to be diff chemo drugs / lengths of time of treatment so as yours is similar it would be good to know ( if you don’t mind sharing). Best of luck for monday - make sure you go in with all your questions resdy. Really hope it goes ok xx

I like this analogy! I’m going to try and picture this and those chemo drugs as the weed killer! Xx

You´re right..great analogy..it´s also worth stretching the analogy a little bit to note that the weedkiller will also have some effect on the other plants (healthy cells) and that you can nurture and help to protect them (and potentially lessen the weedkiller side effects) by focusing on nutrition, exercise (you may well have seen the report from the big cancer conference last week about the importance of exercise...not neccessarily sweat it out cardio stuff, but regular brisk walks, especially when you are feeling fatigued work wonders.) I´m sure that there is plenty of advice on this site, including stuff like yoga, mindfullness, and even visualisation  (which is basically what you´re doing with using the weedkiller analogy), there is so much that you can do yourself that puts you front and centre and in control, working with your brilliant oncology team...and the rest of us. All the best to you for your next meeting and another step back to full health. (I´m currently mid way through round 2 of 8 Capox rounds, 5 out of 45 nodes harvested were positive on removal of a tumour at the splenic junction (where the tranverse colon turns to come down the descending colon on the left hand side). So far so good, but as you know side effects are different for everybody, and this is early days. I live in Spain, and we too have excellent oncological support in the public health system. Currently it´s 36 degrees, and I do have a siesta (=power nap) every afternoon, but I´m putting that down to the heat rather than chemo fatigue. Frustrating that I have to keep out of the sun as I love sea swimming, but I´m using this as a six month project to get back to full health, and I relish a project!