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Beating bowel cancer together

Stage 4 bowel cancer

You can find information about advanced bowel cancer on our website, including our Treating advanced bowel cancer booklet. You can also join our Living with stage 4 bowel cancer Facebook group.

aleipn

Feeling a bit worried and anxious

Hello. This is my first post and I was just wondering if anyone was in the same position who could offer some advice.

I am 39 and have just had a recent diagnosis of stage 4 colorectal cancer T4b N1 M0 with extension in to surrounding structures and muscles but not to any organs. I have completed 6 weeks of chemo-radiotherapy and currently awaiting repeat staging scans to be told how much IV chemotherapy I will need (am on the total neoadjuvant therapy pathway) prior to surgery at a later date (all they will tel me is it will entail a permanent stoma ☹️)

The chemo radiotherapy was rough, especially towards the end and I am still recuperating from a stage 3 radiotherapy skin reaction as well as other side effects.

Has anyone else done this treatment?? Waiting for the next stage is really difficult and trying not to worry.

Jane39

Hi @aleipn
Welcome to the forum although sorry to hear of your diagnosis.
I don’t have personal experience of your exact treatment but I’m sure others will be along to offer their advice and support.
It’s always a difficult time waiting to hear of next steps and treatment plan.
Do you have the support of a clinical nurse specialist?
Take care
Jane :x:

Liz Blakelands

Hi @aleipn warm welcome to the forum but really sorry to hear about your diagnosis. Well done for completing the chemo-radiotherapy, I don't have experience of it but I know it can be tough. I'm sure someone with experience will be along soon.

Waiting is a big part of the bowel cancer treatment path, waiting for results, waiting for treatment to start. It is hard, just try to focus on something else or do something you have to concentrate on.

Big hug
Liz :x::x:

Wegwe

I can’t answer your question but wanted to point out that if you were staged as T4N1M0 you do not have a stage 4 diagnosis. The staging can be confusing; T4N1M0 is stage 3: positive lymph nodes, no distant metastasis. Stage 4 means that there are metastases.
Good luck with your treatment!

aleipn

Thank you for your advice. The hardest part is the waiting. Especially when reading other people’s stories and not knowing what is happening wit yourself. Am trying to keep busy but sometimes just find myself in limbo.

Alex

Quote from @Liz Blakelands:
Hi @aleipn warm welcome to the forum but really sorry to hear about your diagnosis. Well done for completing the chemo-radiotherapy, I don't have experience of it but I know it can be tough. I'm sure someone with experience will be along soon.

Waiting is a big part of the bowel cancer treatment path, waiting for results, waiting for treatment to start. It is hard, just try to focus on something else or do something you have to concentrate on.

Big hug
Liz

aleipn

Thank you. It is so confusing, my colorectal consultant informed me it was stage 4, hence the confusion. Currently waiting for repeat scans to check if it has responded to first treatment.

Alex

Quote from @Wegwe:
I can’t answer your question but wanted to point out that if you were staged as T4N1M0 you do not have a stage 4 diagnosis. The staging can be confusing; T4N1M0 is stage 3: positive lymph nodes, no distant metastasis. Stage 4 means that there are metastases.
Good luck with your treatment!

MattyB

Hi, I am also new to posting on forum. I went through radio chemotherapy for 5 weeks in Sept 2021. I did find that after I got burns which was sore but did go after a few weeks.
I also now have a permanent stoma which is relatively easy to deal with so please don't worry too much about that.
The waiting is always hard, but if you can focus on something else the time soon goes. I was lucky I could concentrate on work.
Good luck and try not to worry..

aleipn
Quote from @Jane39:
Hi @aleipn
Welcome to the forum although sorry to hear of your diagnosis.
I don’t have personal experience of your exact treatment but I’m sure others will be along to offer their advice and support.
It’s always a difficult time waiting to hear of next steps and treatment plan.
Do you have the support of a clinical nurse specialist?
Take care
Jane

Thank you for your kind comments. I have a CNS but she is based at a different hospital to my oncologist as they currently don’t have a CNS on service. Will try and get in contact.

Alex

aleipn
Quote from @MattyB:
Hi, I am also new to posting on forum. I went through radio chemotherapy for 5 weeks in Sept 2021. I did find that after I got burns which was sore but did go after a few weeks.
I also now have a permanent stoma which is relatively easy to deal with so please don't worry too much about that.
The waiting is always hard, but if you can focus on something else the time soon goes. I was lucky I could concentrate on work.
Good luck and try not to worry..

Hi Matty

Yeah the burns have been particularly awful for me and have only just almost healed 3 weeks after finishing radiotherapy.

I am glad to hear that your experience with the stoma has been good though, am a little nervous of that when the time comes for me. I am trying to keep myself busy but sometimes it is difficult and I haven’t really met anyone doing the same treatment as me yet so not sure what other experiences are which would be good to get to know. Am finding not many people around me can understand what I am going through

Am hoping things are going good for you know

Alex

Siona

Hi @aleipn and welcome to the forum. I had chemotherapy as neoadjuvant treatment but no radiotherapy. I had a scan then a couple of weeks to recovery before surgery. As the chemo worked really well, I didn't need further treatment after surgery. But it's a case per case basis. The good thing about neoadjuvant is that the results can be seen on a scan and this can guide the following steps in your treatment.
Take care :x::x: