Local advanced bowel cancer

Stress is VERY exhausting. I haven't even been diagnosed yet and my stress has been very high worrying about what I'm going to be told. I would suggest you see a therapist to talk it out. I think talking to people going through similar experiences helps a whole lot too because it lets you know you're not alone, you've got plenty of people in your boat! That's why I'm here. I'm still worried but misery loves company as they say. 

Hi Sarah. 

Thank you for your message. 

I'm so very sorry to hear that you are awaiting results. Have you had an mri or ct scan yet?

I have a colorectal nurse to phone although there was no answer just now when I tried her. 

I hope you have family and friends that are helping you through your torturous wait. 

Just know that there is a wonderful team of people there working very hard to give you the best possible care they can. 

All the very best

PaddyBud x

Hi Paddybud I’m so sorry to hear you’ve been diagnosed with a rare bowel cancer. Any cancer diagnosis is hard enough to come to terms with. It’s awful that you’re looking at treatment so far from home. My liver specialist is only about 50 miles away from where I live, but it’s a 4 hour round trip. Post on here when you want to offload, want advice and anything else! I have been a part of this community for 4 years now, and the lovely people on here have been a great help. It’s all very well having a medical professional telling you various things, but priceless to get firsthand accounts of what to expect. Wishing you all the best.

Hi 

Take some time to process the info.

Sending you a hug. Please don’t worry about the PET scan it’s no worries. Just take something to pass the time whilst you wait t

best wishes 

Hi Jools63

I'm so pleased that they are still aiming to treat it then possible operation but that would probably mean needing a stoma so I don't want to think that far ahead. 

I filled in mycareplan online for my keyworker yesterday which was a positive step I also dosed up on painkillers and went for a lovely long walk then saw some friends after cooking myself a healthy veg heavy dinner. 

I have to remain hopeful that as they say it hasn't spread but it is pushing up against my prostate which concerns me... 

Wishing you a lovely weekend 

PaddyBud x

Good morning Artsie. 

Thank you. I'm just worried thet they would see it has affected  my lymph nodes or worse it has affected my prostate. But one thing at a time I keep telling myself.

Wish you a lovely weekend 

PaddyBud x

That’s the way. One thing at a time is the very best way forward. Treat yourself to something that you like over the weekend 

Best wishes 

Hello Paddy, I have stage 2 locally advanced colon cancer which was/is growing out from my colon butting up to my duodenum and liver. They were unsure at the time if it had gone into my duodenum/liver. Is yours a mismatch repair or called a dMMR cancer which is rare? Mine was, which meant they could give immunotherapy, a drug called Keytruda ( Common name). I have been on this for 10 months now (given to me by The Churchill Hospital Oxford) and I know everyone responds differently but I have been so lucky, my cancer has gone by at least 90 odd% and hopefully it has shrunk back for my liver/duodenum. I will know shortly because today I have another CAT scan, and in a couple of weeks a PET/CT Scan to see if the cancer has all gone. I just wanted to let you know there is so much hope, the plan for me from the start was to shrink it, then operate which happens to a lot of people, it's the normal procedure, then usually everything is fine. For me they might not even need to operate now. I know its hard not to look at the other side of things, as I did, but here 10 months later totally different. Always believe. If I can be of any help on here please ask.

Good morning Tom143

I thank you for reaching out to me. 

I'm not sure which exact cancer I have. I probably should so I know what I am dealing with. 

It is so encouraging to hear how well you are responding to the treatment. Immunotherapy was suggested as a possible treatment right at the start of my journey however it hasn't been mentioned recently. Instead they are suggesting chemo and radio therapy. 

They have suggested surgery after the chemoradio therapy may be necessary but because it is so low down the bowel I would need a permanent stoma but I can't think that far ahead at the moment. 

You are progressing so well and I wish you all that is good for a continued improvement in health. 

It has been so painful I'm a little concerned that this past couple of days the pain has eased I am hoping it is nothing to worry about... 

Kind regards

PaddyBud 

Hi again Paddy, I had some pain before I started my therapy mainly in my back where the cancer was pushing on my liver. Sometimes it was there, sometimes it went for a while. If immunotherapy was mentioned it sounds like you may have mismatch or dMMR cancer? If it is immunotherapy reacts very well to this cancer. From what you said it sounds your cancer is more anal? I think. It that is the case read about the NICHE-2 Trial online. One reason they might not be giving you immunotherapy is that it not on NICE list for stage 2 cancer. Because of where mine was and the extent of the invasion my oncologist managed to get the funding for me, it is not my place but why not ask your oncologist if the can try, I said where I have having my treatment, maybe ask them to contact them to find out about how they did it for me. My experience has shown me you don’t get unless you ask. They have told me if I have the operation there is a good chance I might have a stoma, not the best but it could be worse, much worse, Fred Astaire had one in later life, so still time for me to learn to dance