Need help for friend with Lower Rectal Cancer

musiclover

My friend has cancer of the rectum very close to his anus (large mass). I'd appreciate any words from those out there that have/had this condition, treatments they are doing/have had, where they're at now and/or anything else that may be useful to my friend. He is not going to any support group which I think would be good for him. He's in Los Angeles and if anyone knows of a good group, please post that info so I can forward that to him. He's just completed three weeks of chemo (Xeloda) and radiation and aside from tiredness and chronic constipation (had that before - not a side effect) and some pain (takes an occasional Vicodin) he's doing pretty good. Thanks SO much for all the previous posts. They have been so helpful to him.

jana11

Sounds like me. I had a lower rectal mass. Took xeloda and radiation pre-op. Had APR (abdominal perineal resection) meaning colostomy for life because of it's location near the sphincter. 3/13 lymph nodes were positive. Then xeloda + CPT-11. I worked through all of it.
Now I have lung mets and am taking CPT-11, erbitux, and avastin. Again working 4 days/wk and living my life. Doing pretty well.

If your friend wants, they can write/email me and I will answer any questions. I was diagnosed at 32yr old, and didn't feel comfortable in groups, but I did see a therapist who was also a cancer survivor.

You are a good friend for getting this for them. jana

cal79

I had a large mass in the lower third of the rectum and I was able to have sphincter sparing surgery.

My surgeon performed an ultra low anterior resection with total mesorectal excision and j-pouch formation. This basically means that he removed all of my rectum and sigmoid colon and all the fatty tissue around it. He then created a new rectum by forming a j-shaped pouch out of the colon, and attaching it to the anus. A temporary diverting stoma is also required while the site heals (7 months in my case).

I believe this surgery is only an option for people with tumours in the mid or lower portions of the rectum, with no anal involvement, and I think it can only be done as open surgery (huge scars!). Also, the sphincter muscles have to be really strong, as the new rectum ain't like the old one!

If sphincter saving surgery is an option for your friend and he/she is considering it, I would recommend shopping around for a really, really good colorectal surgeon who specialises in these types of procedures, and check how many times they have performed each particular op (including how many in the preceding year).

Good luck with everything and let us know how your friend is getting on.

Cal

taraHK

My story is quite similar to Jana's. I had a very low rectal tumour. My treatment was 5.5 wks chemoradiation, then a 5-6 wk break, then surgery, then more chemo. My surgery was also APR, resulting in a permanent colostomy. Every good hospital/surgeon will do their very best to avoid permanent colostomy, but sometimes it is unavoidable. It can be a difficult thing to accept at first, but for me it is really no big deal now -- I live a very full life, including active at sports. Two years after my initial surgery, a small lung met was discovered. I had surgery for that and am now having chemo (almost finished!). I wish your friend all the best. Would he be comfortable joining in this group?

musiclover

taraHK said:

My story is quite similar to Jana's. I had a very low rectal tumour. My treatment was 5.5 wks chemoradiation, then a 5-6 wk break, then surgery, then more chemo. My surgery was also APR, resulting in a permanent colostomy. Every good hospital/surgeon will do their very best to avoid permanent colostomy, but sometimes it is unavoidable. It can be a difficult thing to accept at first, but for me it is really no big deal now -- I live a very full life, including active at sports. Two years after my initial surgery, a small lung met was discovered. I had surgery for that and am now having chemo (almost finished!). I wish your friend all the best. Would he be comfortable joining in this group?

Thanks so much to all that responded. My friend doesn't have access to the internet and I'm trying to get him online by buying him a laptop. I've been trying to get him interested in going to a support group which he has no interest in. Perhaps the annonyminity of this board would be better. I certainly have learned a lot from reading the posts here. I will pass on all the info that ya'll have given above. Thanks again so much.

MerkMan822

cal79 said:

I had a large mass in the lower third of the rectum and I was able to have sphincter sparing surgery.

My surgeon performed an ultra low anterior resection with total mesorectal excision and j-pouch formation. This basically means that he removed all of my rectum and sigmoid colon and all the fatty tissue around it. He then created a new rectum by forming a j-shaped pouch out of the colon, and attaching it to the anus. A temporary diverting stoma is also required while the site heals (7 months in my case).

I believe this surgery is only an option for people with tumours in the mid or lower portions of the rectum, with no anal involvement, and I think it can only be done as open surgery (huge scars!). Also, the sphincter muscles have to be really strong, as the new rectum ain't like the old one!

If sphincter saving surgery is an option for your friend and he/she is considering it, I would recommend shopping around for a really, really good colorectal surgeon who specialises in these types of procedures, and check how many times they have performed each particular op (including how many in the preceding year).

Good luck with everything and let us know how your friend is getting on.

Cal

J-Pouch
I had lower rectal tumor too & was lucky enough to get a j-pouch! I'm 2-yrs cancer free. Although, I still have trouble with BM's....there's pain and a feeling that I cannot complete or empty myself. I've only been back to work for 11-months...and I'm so exhausted when I get home. I take a power nap!!! Anyways...as I'm new to this discussion board...does life ever get back to normal? I do not sleep through the night...as I have to get use to the toilet. I feel as I'm getting back to normal but after 2-yrs with a j-pouch, I thought I'd be better than I am. This is such a slow recovery for me. Did most of you recover quick or do you still have issues? Does anyone have any idea's? I watch what I eat & don't drink alcohol or caffine either. I've given up so much that I'm at a loss of "what else can I do to help myself?" I love fishing & I can't trust "myself" out on a lake. I still wear depends...because my BM's have a mind of their own. I'd rather wear protection than have a mess for the world to see. So, if anyone has any thoughts or suggestions....I'm so ready to try anything & everything! Thanx...merkman

Betsydoglover

Old post................
Hi all -

Musiclover's friend passed a few years ago.

I so wish this board would prompt folks who are responding to "old" posts - perhaps 6 months? We have so much to offer one another, but responding to a post that is a few years old can be less than helpful.

Betsy