Colon cancer with peritoneal secondaries

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Hello

I was recently diagnosed with bowel cancer, which, I guess as like for most people, came as a total surprise. I had no symptoms, I’m in my early 40’s, fit, active and so I thought, healthy.
So to suddenly experience extreme abdominal pain, which after a week and a useless GP, landed me in a&e, to then have emergency surgery, a tumour removed and a colostomy bag fitted, then a cancer diagnosis, was shocking to say the least.

Aside from the tumour, there were two small cancer deposits in the omental lining (omentum/fatty tissue) which were also removed, no lymph node involvement. I then had a PET scan and the results revealed two more cancer deposits in the omentum, which I think the oncologist said is peritoneal, so it would be bowel cancer with peritoneal secondaries.

I am 1 cycle in to a Capox/Capecitabine 3 month course. Due to the peritoneal spread, I may be having a further operation to remove the areas where there are deposits, but this isn’t certain yet.

The future is looking so uncertain. I don’t know anyone even near my age group going through anything close to this, so nobody in my family/friend circle can relate.
My family are very supportive and want to do anything and everything they can, which is great. I just thought I’d join an online forum with people going through a similar experience.

If anyone has bowel cancer with secondary spread to the peritoneal region, please feel free to share any tips.

SomersetKLF 7 months ago

I am really sorry you are going through this.

I am 52, but still feel so young to be hit with stage3 bowel cancer. My life is all about friends, going out, holidays, work and going to fitness classss; no one ever imagined I would be the one who got cancer.

Mine is lymph node involvement, but was rectal cancer so I have the stoma and barbie bum! Now 9 weeks post surgery and mid way through round 1 xelox chemo for 3 months.

I have found little milestones have helped. My first walk longer than 20mins, driving again, my first fitness class in 9 weeks was today and I felt so happy (even if I did lay on a mat in the corner for 30% of it).

I think your internal resilience is tested every day, you some how find a way to get through it the best you can. You are young and they will medically throw everything at you.

All you can give yourself is time to adjust to the new you.

SomersetKLF 7 months ago in reply to SomersetKLF

Ps. Not sure why there is a random bullet point!! Sorry

Cyclone 7 months ago

I have the same but with extensive peritoneal metastasis and am considered palliative. Though with a BRAF mutation which means a different path. Have you been checked for BRAF. ?

The only tip is to keep fit and be informed. And take charge as I didn't and regret that now. Make sure all the team is on the same page.

I am 3 months from confirmation of cancer and still no treatment. Soon start with a highly toxic brew of chemo, as BRAF is somewhat resistant to chemo, and will be reassessed for HIPEC surgery. Fitness is required for either option, as both are brutal. Good blood pressure, heart rate, healthy lungs etc, And breathing exercises help surgery recovery and reduce complications.

As you have already had surgery not sure if HIPEC will be an option but please do ask about it. They open the entire abdomina cavity and try to find all nodules on the peritoneum and remove them. Once done, another team treat the cavity directly with heated chemo to target smaller cells. It significantly improves 5 year survival rates if no BRAF mutation.

So hopefully you do not have BRAF, but please confirm. Also does not seem too extensive, but perioneal scondary is drawing the short straw. I am sorry for anyone that is going through it, especially so young. I think I am too young pushing 70.

Keep in touch. And hopefully very early secondary. Also ask about a PCI measurement. Peritoneal Cancer Index. Lower the score the better. Once it gets quite high they do not offer treatment.

KimLondon 3 months ago

lilsimbax Hi Lilsimbax, I'm like you early 40s (42 when diagnosed but 43 now). I am waiting to hear if I have peri spread. I think the operation you're talking about is HIPEC. I don't have any tips yet but just wanted to say hello. How are you getting on with treatment?