Colostomy

My husband was diagnosed with rectal cancer a couple weeks ago and his pet/ct scan shows no metatsis. His primary tumor is large and so low in the rectum (6 cm from anus) that two surgeons have told him he will probably need colostomy. He's a hearty, robust farmer and is totally antagonistic to the idea of a bag. We met with one oncologist who gave him hope he could reduce the tumor size with chemo/radiation, but no guarantee about the colostomy. Today we met with a Mexican doctor who uses cobalt radiation rather than linear accelerator used in the states. He says the cobalt is more potent and gives 3,000 cgy of radiation in 10 fractions over 2 weeks which is equivalent to the 5,000 cgy given in the US over 6 weeks. He then asks the patient to wait 5 weeks before surgery to allow the tumor to shrink more. He swears the tumor can be reduced to about 1/4 of its present size and can then be removed without removing the spincter. Also, he uses a combination of 5 fu and doxorndicin as chemo in conjunction with the radiation. After surgery he uses Irrintecan for a week along with another dose of radiation to insure the cancer never returns. Again, he says, except in instances where there is a small enough liver tumor it can't be seen on the pet/ct scan, he has had a 100% success rate with this type of tumor never recurring.  Does anyone out there have any information that supports or debunks this man's claims. I'd sure like to hear from you.

Dear Jamax

I have agreed like your husband about a Colostomy bag....But I was lucky and was hooked up with a Dr Marks at Lankanau Hospital in Philadelphia

who was able to save my muscleand didnt push the bag....In addition I had targetted radiation called Tomotherapy and Chemo called Temador and Thallidamide for 6 months at home....So there are other options....

I am now 1 year free of cancer and physically intact....Jeannechat

I would encourage you to view anyone proclaiming 100% results with some skepticism. Advanced rectal cancer has a nasty habit of returning. There is research that also shows there is a difference even between advanced stage 3s, which I am. If you have less than 1-2 mm of mesorectal fat, there is a 24% chance it will return in 18 months. There is a 73% chance it will return in three years. Also, irrintecan isn't as effective as oxliplatin according to recent US research and most US doctors no longer use it. Something else to consider is that it doesn't matter if the tumor shrinks or not because the surgeon needs room for a clean margin. For example, my 6m tumor was 8 cm up. My surgeon actually tattoed around the tumor so she could ensure that after chemo/radiation (which eliminated my tumor on the the PET/CT, but it was still there on a microscopic level) she would know how much tissue to take. That barely allowed enough room so that my ileostomy could be reversed. You need at least 2cm for a connection. One cm of tumor contains one billion cancer cells and it only takes one to generate a new tumor. From my bed at Mayo Clinic (just had my reversal)... Good Luck!

On 4/5/2007 Jamax wrote:

My husband was diagnosed with rectal cancer a couple weeks ago and his pet/ct scan shows no metatsis. His primary tumor is large and so low in the rectum (6 cm from anus) that two surgeons have told him he will probably need colostomy. He's a hearty, robust farmer and is totally antagonistic to the idea of a bag. We met with one oncologist who gave him hope he could reduce the tumor size with chemo/radiation, but no guarantee about the colostomy. Today we met with a Mexican doctor who uses cobalt radiation rather than linear accelerator used in the states. He says the cobalt is more potent and gives 3,000 cgy of radiation in 10 fractions over 2 weeks which is equivalent to the 5,000 cgy given in the US over 6 weeks. He then asks the patient to wait 5 weeks before surgery to allow the tumor to shrink more. He swears the tumor can be reduced to about 1/4 of its present size and can then be removed without removing the spincter. Also, he uses a combination of 5 fu and doxorndicin as chemo in conjunction with the radiation. After surgery he uses Irrintecan for a week along with another dose of radiation to insure the cancer never returns. Again, he says, except in instances where there is a small enough liver tumor it can't be seen on the pet/ct scan, he has had a 100% success rate with this type of tumor never recurring.  Does anyone out there have any information that supports or debunks this man's claims. I'd sure like to hear from you.

I am a 42 year old woman, I have had a colostomy for about 13 years.  I was told my chance at survival would increase with the chem, radiation and colostomy.  I chose to give my self the chance to live.  It has been difficult to live with the colostomy.  Not personally, but in having relationships with people who do not understand what it is.  I think your husband would want to take the approach that would allow him the best chance of living a productive life.  Living with a colostomy bag is really not that difficult.  There are easy ways to manage it, such as irrigating daily for about 1/2.  which means you don't have to empy a bag.  Good luck.

Jamax, of course you and your spouse would like to believe the Mexicam doctor is able to do what far better US doctors aren't able to accomplish but it just isn't true.  Unscrupulous medical personnel in Mexico have long used people's fear of cancer for their own personal  enrichment.  I would caution your spouse about trying to get along without a colostomy; my spouse had rectal cancer  surgery diagnosed 9/01 with neoadjuvant chemo and radiation to shrink the tumor and it did shrink considerably.  But as someone else pointed out, a suitable margin must be maintained and was; in any case, he wished not to have a colostomy so as a result, there was not enough of anything left to form a J pouch for storage of waste material which is often the usual procedure in these cases.  He is often in the bathroom 20-30 times a day or more.  Our way of life has changed forever; we can no longer go to plays, which we used to love.  We often can't leave our home together for days on end for more than an hour or so because he is tied to the toilet.  He has to wear a diaper 24/ 7 and his butt is frequently painful, both inside and out, during these episodes of frequent toileting, due to radiation scarring.  He has been told this will never get any better.  I feel we weren't given warning that this would be the case and so we naively assumed his bathroom habits would on as usual after surgery.  To add to this dismal picture, he was diagnosed with pancreatic cancer last 11/06 which brings diarrhea as an almost constant symptom.

Your husband won't be able to say he wasn't warned if this happens to him!!!!  Do your homework, ask questions and stay away from Mexican quacks if you value your health and life.

 

Good luck.  Joan L 

I wrote a detailed post on my own colostomy (see "My Colostomy: Details).  As I wrote, I have a friend who didn't have the colostomy and he has to wear depends 24/7.  Would your husband consider going to a colostomy support group and asking questions?  I have two major side effects from my colostomy:  sexual dysfunction and a large hernia.  If I didn't have these two side effects, wearing the bag would be a walk in the park compared to wearing depends and having to go to the bathroom constantly.

Billy H.

Charlotte, NC

 

 

 

 

I had to have a colostomy in August 2006 due to rectal cancer. Of course, I was devastated. It took me a long time to adjust to it -- both mentally and in handling the "blowouts" (I was on FOLFOX6 for 6 months). My surgeon is now entertaining the idea (at my request) to have it reversed. However, from what I've read, especially on the UOAA message board, I'm not so sure I want to have a reversal now. I've finally adjusted to life with a colostomy, and it's really not that bad (except for all of the fruits and veggies that are hard to digest). I realize this is an old post. What did you finally end up doing.

 Remember, colostomy is NOT the end of the world. For many, it actually IMPROVES their quality of life.

I even travel now.

Pam