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Profile picture for lauramae3 @lauramae3

It's a difficult situation because the cancer is slow growing. We don't know if the pain he is experiencing is cancer or the abdominal wall due to his ileostomy. Fortunately, Tylenol is helping with the pain. Day by day for both of us.

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Replies to "It's a difficult situation because the cancer is slow growing. We don't know if the pain..."

My situation is different, but I understand a bit of that. Because the prostate cancer compressed my spine and permanently damaged the nerves, I have weird pains (or lack of sensation) all over, and find it almost impossible to know what's normal and what's not, so I probably wouldn't recognise pain from a new tumour if it started growing.

That said, with prostate cancer we have the benefit of PSA as a strong marker (especially with the ultrasensitive test), so when that's combined with periodic medical imaging and other blood work I can be reasonably confident (never 100%, of course) that my cancer is staying dormant and not progressing yet.

For pain management, I tried many things without success, but eventually ended up on Pregabalin, which is very effective for reducing nerve pain like mine; however, it also reduced my already-damaged sensation in the area where I'd been paralysed, so with my doctor's consent, I titrated off it gradually (there were a few false starts, but I finally stopped completely after about 18 months). In the end, I preferred feeling my legs, feet, and abdomen a little more to being pain-free and numb, but that's a very personal choice, and everyone will respond differently. I still take a Tylenol to help me sleep when the pain is elevated, but most nights I manage without.