Small Bowel Cancer

There is no category on this site for small bowel cancer, although I have found a forum on it at another site.  Is it possible to open a new category for small bowel cancer?  It is rare and patients are searching for answers and support.  If anyone reading this is interested please post a message and perhaps consideration will be given to adding small bowel cancer to this site.  I believe there is a need for it.

Thanks.

2ndtimer

Hi lqfem,

I hope you have received a good result from your husband's biopsy.  If you need more info on it I know of a site with a message board containing lots of information from other patients with small bowel cancer.  But hopefully it is benign and you won't need to go there.  People care so let us know how things are going.

Lynn 

My husband was diagnosed in Aug of 06 with cancer of the terminal ileum.  There is very little info out there.  The oncologist even said that he had difficulty.  He treated it like colon cancer, since the terminal ileum (last third of the small bowel) is right before you get to the colon.

We are now on round two.  A recurrence was found last week, in basically the same place, but now outside the ileum. 

What I have found is that small bowel cancers are very rare, about 2% of cancers reported are small bowel.  The most common sbc is adenocarcinoma, which most often occurs in the duodenum (first third of the sb).  So, since my husband's is in the ileum, it must be even rarer than most?

They are also very aggressive.

I would love a small bowel category on this site.  I have been posting mainly to and reading in colon cancer category.

LeeAnne

On 6/8/2008 Sickofitall wrote:

My husband was diagnosed in Aug of 06 with cancer of the terminal ileum.  There is very little info out there.  The oncologist even said that he had difficulty.  He treated it like colon cancer, since the terminal ileum (last third of the small bowel) is right before you get to the colon.

We are now on round two.  A recurrence was found last week, in basically the same place, but now outside the ileum. 

What I have found is that small bowel cancers are very rare, about 2% of cancers reported are small bowel.  The most common sbc is adenocarcinoma, which most often occurs in the duodenum (first third of the sb).  So, since my husband's is in the ileum, it must be even rarer than most?

They are also very aggressive.

I would love a small bowel category on this site.  I have been posting mainly to and reading in colon cancer category.

LeeAnne

LeAnne,

I have requested a category for small bowel cancer on this site, too, but don't know what is required before one will be established.  Try doing a google search for rare cancers or small bowel cancer and you might find Rare Cancer Alliance which has a forum for small bowel cancer.  I hope I'm able to mention another site here, afterall, this is all about helping people, and the info we need is not offered on this site.

Sorry about your husband's recurrence.  Having a rare cancer is extremely frightening.  I was diagnosed with sbc almost 2 years ago (adenocarcinoma near the duodenojujunel junction, however it is spelled).  I now have either an ulcer or tumor in the sb, in the lower part they think.  It did not show up on scans and they can't tell from the capsule endoscopy (pillcam) exactly where it is located.  I'm seeking a 2nd opinion before having surgery since I have now found out how dangerous the surgery is.  

Did your husband have surgery again and what kind of chemo is he taking this time?  You'll both be in my prayers as you go through this a 2nd time.

Lynn       

On 7/14/2008 thalayur wrote:

i would like to discuss about duodinal adeno carcinoma.

I had it 2 years ago.  I had surgery and 6 months of Folfox.  I'll be happy to share with you, either openly here or you can send a private reply.  Your choice.  This site still does not have a separate category for small bowel cancer.  I do know of another board that has a section for small bowel cancer and you can gets lots of info and support there.  Are you the patient or caregiver?  Hope to hear from you.

Lynn  

thank you for the response,i am the care giver. my husband had whipples surgery for duodinal adeno carcinoma(T4 N1 MX) 2 months ago. since node involvement he is on chemo now. oxaliplatin  IV 3 weekly, coupled with XELODA 1 gm twice daily for two weeks. 2nd of 6 courses over. i would like to here from u all possible details regarding prognostic expectations and news from survivers. also kindly send me the link providing detaila of this rare situation

              waiting to here from you

                                                 thalayur
 

Hi Thalayur,

My chemo was Folfox (oxaliplatin and 5fu), 12 treatments that ran for 48 hours every other week, taking approximately 6 months.  Side effects were cold sensitivity which worsened as treatment progressed, but went away totally after chemo ended.  Another side effect is numbness and tingling in hands and feet.  Watch for that, too.  Mine did not start until after chemo ended.  It usually goes away, too, but in my case it improved but did not completely go away.  I also developed some lung problems after chemo ended, which is not normal, but it went away and is no longer a problem.  I understand your curiosity about stats for survival.  Small bowel cancer is rare so there are not that many cases to study and since testing for it is difficult, quite often the disease has progressed before it is found, resulting mostly in poor prognoses.  I looked up the survival rates when I was first diagnosed and it was not good, so I put it out of my mind and don't remember the rates.  I decided to focus on the possibility of being a survivor and not let negative numbers and negative thoughts take over.  There are always exceptions to the statistics - therein lies our hope.  If you really need to know your husband's prognosis ask his doctor.  He can give you a better idea based on your husband's specific case.  The other board that has a section specifically on small bowel cancer is Rare Cancer Alliance.  Do a google search and it should be there.  You will need to register but it is free and there are lots of caring and supportive people there, just like on this Cancer Compass site.  There are success stories that might give you hope and also some posts by people who have had successful whipple surgery.  Good luck to both of you.

Lynn 

hai Lynn,

             I had send details regarding my husband's condition. that messege is not seen here,hence repeating--

  he had wipples surgery for adeno ca of duodinam, 2 months ago. now on chemo, he had 'T4-N1-Mx' stage. i would like to here from survivers of such condition, also help me with any links to guide me through this rare condition and it's possibilities. hope you are doing well.

                                         yours with prayers thalayur