Cancer of the Intestine/Small Bowel-Just Diagnosed

There is no crazy rush to be treated - the cancer has likely been growing for years.  A few weeks, or even a month or so, shouldn't make a difference.  It is better to get the right treatment than just any treatment.  The biggest rush is emotional - once we hear those life-altering words "you have cancer" we want to get rid of it immediately. 

I go to Memorial Sloan Kettering.  Their colo-rectal group is excellent, but it could take 4 or 5 weeks to get an appointment.  MD Anderson is an excellent resource.  And yes, you want him to be healed before further attacks are made on his body.

Of note, my rare cancer (appendix) was found in early April, 2007.  My first onc appointment (local onc) was about 2 weeks later.  My first specialist consult wasn't for another few weeks.  And my follow-up surgery and treatment was comfortably scheduled for late July, 2007, exactly 16 weeks after my cancer was discovered.  Despite being stage 4, the delays ensured I got the proper treatment.  I'm fine now.

Alice

stanbridge said:

Great News

That's a great story, Alice.  I have been reading a lot lately about appendix cancer and the unique treatment offered.  There was a great website for it, as well.  Wish there was one for small bowel cancer...

Hi Gina!  My 58 year old husband was diagnosed with small intestine cancer (specifically, metastic adenocarcinoma of the Jejunum) in February this year.  Even though your husband has small intestine cancer as well, their journies seem very different.  My husband noticed pain and discomfort in his abdomen last November.  Got to be too much so started seeing his regular doctor and after blood work, followed by CT scan where small masses were discovered on his liver, lungs and omentum another CT scan with liver biopsy determined cancer but then had to get a PET scan in order to determine Primary, which it did in February.  There is not alot of literature out there on it .. it is a rare cancer as you know.  My only conclusion after doing alot of research, most under colorectal cancer, is that everyone's cancer is unique to them.  My husband had/has no blockage, so no surgery to date.  He is on palliative chemotherapy every 2 weeks and the drugs used for colorectal are used for his.  First 3 month CT scan follow-up showed all masses were stable .. No growth nor shrinkage.  Still positive news.  His second rescan of last week shows stable again to all masses except in his omentum so a bit concerning but we're hoping it will stabilize by next rescan.

At diagnosis in February we were given a prognosis of 30 months but after reading alot of other's journies in the CR discussion boards here I'm believing no one knows for sure as everyone's cancer is unique to them, so possibility of going years is there.

Hope your husband is doing better.

stanbridge said:

1st Opinion a Disaster

My husband and I went to UCLA to meet the oncologist, and what a fiasco!  The doctor was an hour and a half late, brusque and rushed when he did show up, and basically threw his hands in the air and said "I don't know where to start!" when looking over his files.  The resident with him could barely speak English, and we could not understand a single thing she said.  We were sent off with orders to get scans and blood tests.  In the meantime, we found a strange lump in my husband's groin area that was biopsied by the surgeon and discovered to be more bowel cancer, after we had achieved clear margins with his surgery in February!  At this point my husband thinks he's screwed, we hate the UCLA oncologist, and MD Anderson won't see my husband until his wound vac is off, which will be a few more weeks.  The surgeon wants to close the wound up with stitches, but my husband wants it to heal with the wound vac, so there we are.  Although we are three hours away from UCLA, I had thought it would be worth it because I have gone there for a chronic medical condition I have and loved the care I got.  Call me naive, but I expected a little more hand-holding.  We have no nearby friends or family (we moved to our current location less than a year ago for my husband's work) so I will have to come here and a few others places and vent.  Thanks for listening!

 

Gina in CA

I was diagnosed with small bowel cancer in 2012 (adenocarcinoma in the jejunum, stage 1) and was told I didn't need anymore treatment.  The oncologist in Cincinnati, where I live, was simply unaware of how aggressive small bowel cancer is. By 2014, it had progressed to stage III b.  I did some research and found out that the only doctor that the national institutes of health recommended for research on this type of cancer was Dr. Michael Overman at M.D. Anderson in Houston Texas. I got an appointment with him in October 2014 and he recommended the type of treatment I could have back in Cincinnati. I did  not have to move to Houston and only had to stay there for one week while they did some testing. My cancer is now stage four,  but I feel really good and have a pretty normal life. I failed folfox chemotherapy  and now I just take 5FU and leucovorin. Last week the doctor tried to add Cetuxumab because I have the wild type KRAS gene. However, this new chemo caused my blood pressure to drop so low that I had to be hospitalized.  I had a serious reaction so will not be able to have this chemo again. All I can tell you is that this cancer is very aggressive and you have to keep on top of your treatment and do some research on your own. The doctor in Cincinnati wanted me to go on Folfiri,  but I was not willing to take Ironotican because of the horrible side effects.  Please let me know how your husband is doing.  I noticed other people saying that you don't have to rush to get treatment, I find that not to be accurate. You need to find the doctor with the most experience with your specific type of cancer and get in to see them ASAP. With this type of cancer the goal is just to try to keep it from spreading or growing. The area where the cancer was was surgically removed,  and it came back in the exact same spot on the suture line. The doctor was sure he had gotten it all during the first surgery, but this is a mucosal cancer and is very hard to remove all of it because it's not a solid mass it's kind of like Jell-O in your abdomen.  Let me know if you have any questions, I will be happy to answer them. 

jackflash22 said:

Small bowelcancer

my history is head aNd neck cancer. I had been vomiting and had dreadful stomach area pains. Because of being on a peg tube I blamed the formulas. I got in such a bad state my doc told  my daughter there was nothing more they could do. My daughter wouldn't except this went over the docs head and got me into hospital. After a scan they notice something in my small intestine.. They operate next day and it was a tumour that didn't show on my original scans. The tumour in the small bowel is rare and nearly always slow growing. You can have them years until they give you trouble. They affect your hormone balance to making you weak and tired hot and flushing,  pain and sickness. I was told they had removed the tumour, my further treatment will be drug controlled, no chemo or Radiation. I'm wondering if your husband has the same tumour. I'm in the UK and my hospital is the Oxford unversity John  radcliffe hospital. Since the removal of the tumour...two weeks ago...I have had no pain and can take my formulas again. I can't help you with hospitals as I'm in the uk

Dear Jack,

Thanks for sharing your story.  My mom was diagnosed with Adenocarcinoma of the small intestine.  Surgically all was removed.  No she is being recommended chemo.  What kind of drug control did you have?

Hello,  My 59 year old mother was just diagnosed with adenocarcinoma of the small intestine.  The tumor and 2 affected lymph nodes were surgically removed. There is no spread (as far as we know), while it is stage 3.  The surgeon cut out 22cm of the intestine to make sure the whole area was taken out of her body. She is being recommended chemo that is used for colon cancer as there is no specific chemo for this diagnosis.  Any recommendations will be very much appreciated.  My heart is breaking watching my mom.

By the way, prior to surgery PET CT showed no signs of cancer.  Blood work showed no signs of cancer.  Endoscopy capsule showed nothing.  We are so confused by this whole situation and feel helpless.

AnnaNY said:

Adenocarcinoma of small intestine.

Hello,  My 59 year old mother was just diagnosed with adenocarcinoma of the small intestine.  The tumor and 2 affected lymph nodes were surgically removed. There is no spread (as far as we know), while it is stage 3.  The surgeon cut out 22cm of the intestine to make sure the whole area was taken out of her body. She is being recommended chemo that is used for colon cancer as there is no specific chemo for this diagnosis.  Any recommendations will be very much appreciated.  My heart is breaking watching my mom.

By the way, prior to surgery PET CT showed no signs of cancer.  Blood work showed no signs of cancer.  Endoscopy capsule showed nothing.  We are so confused by this whole situation and feel helpless.

 

AnnaNY...how is your mom doing, now that she is a couple months out from her surgery? I am the same age as your mom and just was diagnosed a week and a half ago with the same thing your mom has. I am waiting for my surgery to be scheduled. I am scared to death. So, she did not have the Whipple? I hope she is recovering with out any issues. I would love to be able to keep tabs on how she and I are both doing once I have my surgery. This was a blow to my family as well. 

((((gentlehugs))))

Hello. I had to go to the ER a month and a half ago for a small bowel osbstruction(no prior surgeries) which resolved on it's own in a few hours - no NG tube needed.  CT scan at hospital showed "tight loops". My GI did my first colonoscopy(I'm 49) and an upper GI at the same time. Both were clear. He then did a CT with abdomen and pelvis as well as small bowel enterography to rule out small bowel Crohn's disease. After about 4 days his nurse called and said he still sees a "thickening" in my small bowel and wants to do a double balloon procedure to look at my entire small bowel. Am I to assume he is looking for cancer? I am a 20 year survivor of soft tissue sarcoma in my right lower wrist. No spread of that tumor and I had surgery, external radiation for 6 weeks and after surgery brachy tube radiation twoce a day for one week. Thanks for any help or experience anyone can offer on this.

abrub said:

See if you can get her a referral to a Specialty Center

To one of the major cancer centers with experience with her cancer.  The colorectal cheom is commonly used for many GI cancers (Folfox); I had it for my appendix cancer for the same reasons.  My tumor type was a mucinous adenocarcinoma.

You are at the head-spinning stage.  You will calm down again (I know, easier said than done, but those of us with cancer have ALL been there and can speak from experience.)

I'm 10 years out from my diagnosis, and doing very well, tho I had a recent recurrence (clear for 9 years.)  More surgery, but no more chemo; wasn't worth it to me.  (I had no lymph node involvement.)

Catch your breath.  See if you can get a second opinion with Sloan Kettering or MD Anderson or one of the other cancer greats.

I am 67 yrs. old and scheduled for FOLFOX to start first week of October.

Dx:   a secondary cancer of Stage 4, Metastatic Adenocarcinoma of Unknown Origin... but, path reports say 74% it is small instestine... tho cannot see any tumour in the small intestine on my CT scans, or PET scan... due to so many loops and folds they told me in the small intestine.

Don't want to do chemo... but it ws dx in late June, and they say it has progressed 'a little' since then... However, my CA 125 marker has dropped from 136 to currently 68.

Go figure.

any suggestions re: dealing with FOLFOX treatments?