late effect radiation enteritis

pializ

Hi,
Does anyone have any experience of radiation enteritis after treatment has been over a while? I understand it is commonplace during treatment.
The position of the tumour & affected lymph nodes plus a lack of mesorectal fat has led my onc to call me in again to discuss the above. Anyone know of anything that can reduce the long term risk?
I am due to start therapy on Tuesday, but really do not want my life sitting next to the loo, wearing incontinence pads, nor being so restricted in what I can eat that it takes verything away from being me.
Thanks
Liz x

mp327

Hi Liz--
Please check out this website. It has tons of information about radiation enteritis.

http://emedicine.medscape.com/article/197483-overview

Unfortunately, radiation is a double-edged sword. It has cured many people of cancer, while causing problems such as enteritis/proctitis that can be lifelong issues, and also other types of cancer. As has often been said, it's the gift that just keeps on giving.

That being said, I am so glad it has been proven to be an effective treatment for anal cancer, as most people undergo this treatment and live normal lives afterwards with minimal issues. More life-altering, IMO, would be undergoing APR surgery, which was the standard of care before it was discovered that radiation could destroy anal tumors when given alone, and could be even more effective when chemo was added. I am not saying that people living with colostomies cannot adjust and live normal lives, but APR surgery has its own list of potentially serious complications, some of them life-threatening. Obviously, if we all had our way, we would never have to undergo either of these options.

As a 4+ year survivor, I will say that my issues with enteritis/proctitis have been minimal so far (knock on wood). As the above website explains, a lot can be done to avoid it or minimalize it, including getting plenty of fluids and eating a diet that contributes to intestinal health. And even though colonoscopy procedures are not focused at viewing the anal canal, I do think that anyone who has had pelvic radiation needs to have colonoscopy performed on a more frequent basis than the average person. Early detection of any potential obstructions or tumors which may be radiation-induced sounds like a good idea to me. That opinion is also held by my colorectal doctor.

Lorikat

Pializ, I left a message to
Pializ, I left a message to you on the colorectal board re anal vs rectal cancer. Just wanted to add that I am now 14 months out of treatment now. The first 8 months or so were touch and go on bathroom issues, but things are getting much better. Since my tumor straddled the anal and rectal areas I am not sure which to call it, but anal prodicol was followed, and I am in remission. I do have enteritis but with help of Docs is manageable. The only real restriction as far as foods is lettuce... Darn! My salad is limited! I guess that means no dieting? A fat cancer survivor? Hummmmmm. Lorie giving hugs

pializ

Lorikat said:

Pializ, I left a message to
Pializ, I left a message to you on the colorectal board re anal vs rectal cancer. Just wanted to add that I am now 14 months out of treatment now. The first 8 months or so were touch and go on bathroom issues, but things are getting much better. Since my tumor straddled the anal and rectal areas I am not sure which to call it, but anal prodicol was followed, and I am in remission. I do have enteritis but with help of Docs is manageable. The only real restriction as far as foods is lettuce... Darn! My salad is limited! I guess that means no dieting? A fat cancer survivor? Hummmmmm. Lorie giving hugs

Hi Lorie
Hi Lorie,

Sounds like your tumour was in same place as the one that has invaded my body. I also have lymph node involvement. If lettuce is the only food I have to give up I will be fine! Never liked it anyway, but it looks good on the plate.

No choices but to have treatment and see where it takes me I guess.

Many thanks
Liz x

pializ

mp327 said:

Hi Liz--
Please check out this website. It has tons of information about radiation enteritis.

http://emedicine.medscape.com/article/197483-overview

Unfortunately, radiation is a double-edged sword. It has cured many people of cancer, while causing problems such as enteritis/proctitis that can be lifelong issues, and also other types of cancer. As has often been said, it's the gift that just keeps on giving.

That being said, I am so glad it has been proven to be an effective treatment for anal cancer, as most people undergo this treatment and live normal lives afterwards with minimal issues. More life-altering, IMO, would be undergoing APR surgery, which was the standard of care before it was discovered that radiation could destroy anal tumors when given alone, and could be even more effective when chemo was added. I am not saying that people living with colostomies cannot adjust and live normal lives, but APR surgery has its own list of potentially serious complications, some of them life-threatening. Obviously, if we all had our way, we would never have to undergo either of these options.

As a 4+ year survivor, I will say that my issues with enteritis/proctitis have been minimal so far (knock on wood). As the above website explains, a lot can be done to avoid it or minimalize it, including getting plenty of fluids and eating a diet that contributes to intestinal health. And even though colonoscopy procedures are not focused at viewing the anal canal, I do think that anyone who has had pelvic radiation needs to have colonoscopy performed on a more frequent basis than the average person. Early detection of any potential obstructions or tumors which may be radiation-induced sounds like a good idea to me. That opinion is also held by my colorectal doctor.

mp327
Hi,
Radiation. Caustic & in years to come will be perceived as barbaric. But that is what we have for now. I wouldn't have been bothered by a colostomy, but it is not an option for me and best protocol is as you have had,
I will look at that site you mention. Neeed to do all I can to make this work.

Many thanks for your invaluable support & information. Much appreciated.

Liz x

Lorikat

pializ said:

Hi Lorie
Hi Lorie,

Sounds like your tumour was in same place as the one that has invaded my body. I also have lymph node involvement. If lettuce is the only food I have to give up I will be fine! Never liked it anyway, but it looks good on the plate.

No choices but to have treatment and see where it takes me I guess.

Many thanks
Liz x

Wait until you order a
Wait until you order a garden salad with no lettuce!! LOL! Lorie