Hi there all
I’m caring for my incredible husband with Stage 4 bowel cancer with liver and lung mets. He was diagnosed with Stage 3c in Jan 2019 but we now know at that time his 7cm tumour, very close to the rectum, has spread its microscopic seeds.
He dealt with 6 months of radiotherapy and also Capecitabine and Oxiplatin. Then a resection to give what we hoped was a temporary ileostomy. All through this he worked and kept up a rigorous fitness regime - he was 49 at the time of diagnosis.
The following year -2020 - was fantastic - pretty much full quality of life except that sexual function had been severely compromised by the radiotherapy and he had some peripheral neuropathy from the Oxiplatin and he struggled emotionally with the ileostomy which was hugely disruptive to sleep
Then came the scan and the totally devastating news his cancer was now incurable as it had metastasised to both liver and lung and recurred at the original site. He sailed through a lung resection and a liver resection and was out of hospital in around 24 hours following both those keyhole procedures and back running!
6 months later - in Oct 2021 he has a massive abdominoperineal resection which removed his anus, created buttocks from his thigh muscles, and changed his ileostomy to a permanent colostomy. He was off pain killers within 4 weeks and back snowboarding by Jan. Sexual function completely gone and urinary control drastically altered. He is is some pain but he isn’t on any pain meds and he’s currently running or doing yoga every day. The colostomy is 10 x better than the ileostomy and he’s meticulous and has had no problems with it at all. He’s slim, muscular, extremely fit and currently earning a great salary as a software developer for investment banking! Pretty much full time still.
But, the cancer is back again. Scans this summer have revealed many spots of activity, 3 in the lung, 2 in the liver and more in the pelvis. We are beginning 2nd line chemo in Sept and I am absolutely terrified this is going to be the last leg of the journey. I read that secondary chemo isn’t great at stopping it returning in the future and also that Folfiri and Cetuximab will affect hair, skin, weight, and make a person quite ill and possibly not be tolerated in which case there might not be further treatment options - though it seems there is Lonsurf as a third line chemo. Obviously I keep hope high for my husband and remain positive for long life for his sake though it sounds increasingly hollow when we discuss our long term future together. My husband alternates between extreme panic and huge mental anguish and then will be very very positive and say he is hopeful of living with this many many years.
I have not read of many stories at all where the person has been living with Stage 4 colon cancer more than 5 years, obviously our incredible Dame Deborah James got to 5.5 yrs, and there is one other man I’ve read of who is now at 7 yrs but he is very poorly indeed and may not have much time left as his treatment is over.
if there are any long term stories here for stage 4 colon cancer please share or point me in the right direction. Thanks for reading.
