General Discussion


My Cancer Story

I am a 59 year old male who was diagnosed ~ 14 months ago with adenocarcinoma of the small bowel (Duodenum) at the University of North Carolina (UNC) hospital complex. This is a relatively rare type of GI cancer. I was diagnosed around my 58th birthday in April of 2017. My cancer was Stage IV from the time of discovery. I had been hospitalized for pneumonia and a pleural effusion in late February of 2017. By April, I was back in the hospital with another pleural effusion. This time the radiologist saw “legions” on two of my vertebrae that were identified as malignant. The subsequent search for the primary type of cancer took about a week. As the result of an endoscope, a small tumor was discovered just inside my duodenum. I met with my oncologist and decided to begin the colon cancer chemo regime known as FOLFIRI. At the time, she gave me the choice of diarrhea & losing my hair (FOLFIRI) or neuropathy and cold sensitivity (FOLFOX).

After a number of months on FOLFIRI, I did not lose my hair and my biggest side effect to manage was severe constipation. Many of the other side effects such as nausea were well managed with medication. The second biggest side effect impacting me was fatigue. I became ill again in mid 2017 and was hospitalized with high fevers and breathing problems. There never was a final diagnosis, but some of the medical team thought it may be a reaction to the drug Irenotecan which is part of the FOLFIRI regime. Upon my recovery, I was switched to FOLFOX which contains the drug oxaliplatin which causes neuropathy.

I infused with the FOLFOX regime for many months. The 3 month scans being performed over this time continued to show improvement, with the reduction of sites the cancer was detected. Progress was improving, but the neuropathy had gotten to the point where all my fingertips were numb, the bottom of both feet were completely numb and areas in my thighs were numb.

With the good results to date, I was put on a “maintenance” dose of chemo consisting of 5FU and ultimately Bev. Unfortunately, my scan in April 2018 showed the return of cells to my vertebrae, a rib and my pleural cavities. accordingly, a month ago I started back on FOLFIRI. My next scan is in early July 2018, and I am hoping for positive results once again.

I want to give my personal experiences with adenocarcinoma of the small bowel because it is so rare and patients tend to get swept up into the huge pool of colon cancer patients. My goal is to connect with others who have this disease.


Hello @screasy59
Thanks for sharing your story and good luck with your current treatment and July scan.

I have cancer of the large bowel but wanted to respond as my mother was diagnosed with duodenal cancer back in 2003 at a very late stage- her GP had thought her symptoms were just a reaction to warfarin. She was advised at the time that this cancer is very rare. However her father had bowel cancer like me and I was advised by the cancer genetics team who assessed me for lynch syndrome that a family history of duodenal cancer is a strong indicator for lynch. They were surprised when my testing proved negative for this.

I hope you are able to link up with others as you say. Best wishes.



I haven't got small bowel cancer @screasy59 but just wanted to say, 'Hi' and wish you a warm welcome to the forum. Thankyou for sharing your experience with small bowel cancer, you've certainly been through a lot!
Best wishes to you and I really do hope the July scan is a good one for you :x::x:

Bear G

Hi @screasy59
Thank you for sharing your story here, it’s important to hear from people with cancer of the small bowel. Coincidentally I was discussing this with the charity’s Chief Exec a few weeks ago as I’d only just learned there was a difference.
Tagging @"Sarah-support and information" in the office so they’re aware of your story.
Big hugs


Hi @screasy59 I was diagnosed with an adenocarcinoma in the small bowel in July 2015. It had gone through my small bowel and was resting on my colon so the surgeon took out 50cm of small bowel and 30cm of large bowel including the valve in between. 12 lymph nodes were involved so I started chemo but after a few days I almost had a heart attack so the chemo stopped.
They say that I have a high chance of a recurrence but I’m about to have my year three scan on Thursday.
There doesn’t seem to be many of us around does there?! Anyway good luck with your treatment, I hope that all goes well. 👍