connection between ulcerative colitis and CC

[weisssoccermom]

Hi,

I could use some info/help from anyone out there. A friend of mine has a son who was having some rectal bleeding & cramps. She talked with me about what to do because I had been diagnosed last year with rectal cancer. Because the young man was only 22, I said I doubted he had cancer, but to go & have it checked out. They did, he had a colonoscopy and the diagnosis came back ulcerative colitis. (Apparently after a biopsy they weren't exactly sure but that is the closest diagnosis that the doc would give them-but definately NOT cancer).

Anyway, he started on all the normal ulcerative colitis meds and was apparently doing better, but then they (not really sure who decided this) decided that all those meds were pretty nasty and they have gone off of them. I have read all about the connection between ulcerative colitis and colon cancer, so I am not sure why they aren't being proactive about his care. Also, in the beginning, she said that he was having a lot of mucous discharge.

The mom is well aware of the connection between this disease & cancer & apparently one of her nephews (also in his early 20's) has this same condition. Everything that I have read says that patients with ulcerative colitis have an increased chance of it turning into cc, but does anyone know the exact odds? 2/3 of his colon is affected although they apparently caught it early.

Also, I have just recently heard of a subgroup of adenocarcinoma called mucinous adenocarcinoma. From what I gather the mucinous "variety" is usually considered more aggressive, because it is made up of at least 60% (did I get that right?) mucous. Since this young man was having a lot of mucous discharge, does that necessarily correlate to a mucinous adenocarcinoma? Are the two even related?

I am worried that by not following through with treatment his condition will only get worse and the cc cancer is a very real possibility.
Sorry for the long post, but I hope someone out there may no a lot on this subject. Any input would be helpful. Our two sons played soccer together for many years both as teamates and as opponents so I know him fairly well. This family has already lost one son at a very young age in a tragic accident and I would hate to see another tradegy happen that could have been avoided. Please give me any input/info to help them with. I definately don't want to see them go through what I have had to or even worse. Thanks

[Hannah]

Hi soccer mom,

You are right, there is an increased risk of developing colorectal cancer for people with colitis - the increased risk starts about 8 years after the colitis began. According to the Crohn's & Colitis Foundation of America, the risk of people with Irritible Bowel Disease (IBD, which is either Crohn's disease or ulcerative colitis) getting cancer is up to five times greater than normal (which is already about 1 in 17 lifetime risk). The exact numbers are hard to nail down, but basically the longer you live with IBD and the larger amount of your colon that is involved, the greater the chance you will get cancer.

That said, the VAST majority of people with IBD never get colorectal cancer. Also, there is not really any evidence that going off the drugs increases the risk of cancer - so the risk is the same regardless if your friend's son takes the drugs or decides not to take them.

Since your friend son's has already had a colonoscopy that diagnosed the colitis, it is unlikely that he has cancer - this is not to say that it isn't possible, because colonoscopies DO miss cancer sometimes. But it is pretty doubtful that he has any cancer, including mucinous adenocarcinoma. Although you are again right that this is considered to be a more aggressive cancer, it is extremely unlikely that he has it - if he did, I can truly say that it is very unlikely that the colonoscopy wouldn't have picked it up. I really mean that it is just extremely unlikely that the colonoscopy would have missed a tumor. The mucous he has been passing is most probably from the colitis, a fairly common occurrence.

He does need to continue to get regular colonoscopies, and to get biopsies of his colon tissue (just to check for any early changes in the tissue). Again, the longer he goes with the colitis, the higher the risk of cancer and therefore the more often it will be necessary for him to get colonoscopies to check out his colon.

Of course I would also recommend that he continue with treatment, but every person is different - he may do okay without the drugs, or may decide that the side effects aren't worth the drugs. My best friend was diagnosed with Crohn's about 12 years ago and it has been a struggle, especially with her drugs. She has had lots of side effects, especially from the steroids. She is now on anti-depressants in addition to her medication for Crohn's, which of course was a struggle and an adjustment for a lot of reasons, but she is doing extremely well. Her health is good on a daily basis, she hasn't been hospitalized in a long time, and just to brag - she graduated from nursing school last year and I know she is just a fabulous nurse!

If you want to learn more about ulcerative colitis, I would recommend going to www.ccfa.org - you can click on "Disease Information" along the left side of the page. They also have a good number of educational brochures that you can download and tons of other info.

I think it's great that you are so concerned about your friend's son (and your son's friend), and are willing to seek out this information. Keep asking questions and let us know if we can help.

Hannah