jsbsf wrote:There was so much sad news when I came here in August 2019 when DH had his colonoscopy. The long term NED posts made me envious, but gave me hope.
The last treatment was late July 2020. It was a 5 day radiation session that covered the entire affected area (low rectal). The last of twelve FOLFOX infusions was on 6/2/2020. Liver resection for 2 mets was in two separate appointments, about a week apart in Feb, halfway through the chemo. That was around the time he started feeling like he might have a chance.
Pretty much all the way through, we both expected a permanent colostomy. I was only concerned about how he would feel with it, and otherwise a lot of people here who have permanent ones made me a lot more comfortable with that. He just wasn’t too crazy about the idea of having one.
Radiation was the hardest for him. I don’t think the oncologist knew just how large of an area was covered, since he originally planned for surgery. He was housebound for two weeks, and only left the house to walk around outside for a week or so more. It took more than another month for him to start feeling like he could go to the grocery store. We weren’t sure if he’d ever regain his ability to hold it, since there was always very little warning.
Originally they expected the major surgery that would require a permanent bag. Then they offered a robotic arm surgery that would leave his rectum intact for the most part, but were unsure of how his quality of life would be. Finally, they agreed that his progress was so good, the radiation wold be the final treatment.
His first exam after the radiation was in early October where the colorectal surgeon agreed to let him watch and wait. Being stage IV, that is considered very rare, but know that it is possible. Since then, he goes every three months for a rectal exam, and every three months for a CT scan. He’s due for his first follow up colonoscopy sometime this year. So far they are giving him a clean bill of health.
As far as the radiation, we were both unprepared - especially since we didn’t think it would be an option. It is really tough on your immune system and I believe it stays in the body for a very long time. He feels fine now. Although there is permanent damage and scarring, he can come and go as he pleases with no fear of an accident.
Congratulations on your DH's recovery. I think he might be the first Stage IV to make it onto W&W. Just like your DH I found the radiation burn to be the worst, particularly the couple of weeks after the last treatment. A bowel movement was incredibly painful, I remember having to go lie face down on my bed with the curtains drawn and just try to ride it out. You start wondering if the treatment isn't worse than the disease, and if it's really worth it. Of course that pain does go away, and that's when you decide it was worth it.
I don't believe the radiation stays in your body for a long time, but I believe some of its effects on your blood counts are just about permanent. It's five years now and all my counts are stable at, or just below, the low end of the normal range. They were all in the middle of the normal range before treatment. The low counts have reduced my ability to exercise.
The effect on your rectum does slowly improve over time, I'm just about back to normal after five years, and my surgeon has difficulty finding any scar tissue left by the tumor. It was well over a year before I stopped having to respond to the urgent need to prevent an accident. I did find if I was outside with nowhere to go, I could stand up perfectly still and focus my entire concentration on holding it in. It would take a few minutes but the urge would eventually go away.
Hope everything continues to work out great for your hubby, for sure the worst is over!
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED