Small bowel cancer

I was diagnosed with small bowel cancer in April 2016.I had surgery to remove a tumour in the jejenum and that was the end of treatment but I remain very anxious about the future. I know this is a rare form of cancer and there are few postings but would like to hear from any one else who has experienced this type of cancer.

  • Hi, I was also diagnosed in April, had a Whipple's procedure in May to remove my duodenal tumour, as well as quite a few other bits.  I've been having Chemo since July (only 4 more weeks to go...)

    My surgical specialist and oncologist seem to have me on the regime for pancreatic cancer, though there are also bowel cancer patients on the same/similar Chemo to me.  Perhaps this was because they took a chunk of pancreas in the Whipple's.

    I assume you have a 6 month surgery follow up?  It would be worth asking about staging and why Chemo and radio therapy were ruled out.

    Hope you get some answers soon


  • Hi 

    My tumour was further down and I had a resection of the small intestine which removed it. The lymph nodes tested were negative so both oncologist and surgeon agreed that chemo would not have sufficient benefits to outweigh possible negative effects and I have to trust them on this . There is very little info available as so rare. I will have follow up. In January as all appointments got delayed over Summer but there do not seem to be any tests or scans that can give early signs of recurrence though chances of this are reasonably strong. Would like to know if this is the same for others


  • Hi Liliannie,

    I had a bowel resection for jejunal adenocarcinoma in September 2015. As it had spread to one lymph node, I was given the option of chemotherapy. I found it quite difficult being asked to make the decision, because there is so little research out there. I did opt for 6 months chemotherapy, and it was not that bad. The oncology team were very supportive and dealt with each of the side effects as they arose. I have just received the results of my second clear scan which is great and feel very lucky. I will be scanned again in 6 months. The only niggle in the back of my head is they did not see the tumour when scanned before my surgery. They thought my obstruction was due to adhesions. I have a very supportive Consultant who said andy symptoms just phone and he will see me. I also attend a Bowel Cancer Support Group which has given me hope with all the positive stories.  Although it is mainly Colorectal cancer, the members who have come through several recurrences of their cancer just makes me realise it can be done.

    I did read as much research as I could get my hands on, which is mostly based on looking back at patient records. Most of it felt very gloomy so I just had to stop in the end. I did ask to be included in any research at my first appointment with the oncologist but he was not aware of any. I later discovered there is an International study called BALLAD going on across Britain and Europe which started in July 2015. It is looking at whether Chemo is effective at all in Small Bowel Adenocarcinoma. I asked my oncologist to refer me. Although it was too late to be included in the full study, they could use my tissue samples and blood samples as a registered participant. It made me feel less powerless to be part of something that may help patients in the future. 

    I would encourage you to also ask your Consultant to see if you meet the criteria to be included. After all, we are rare as hen's teeth, or so they say! 

    Good luck with your follow ups.

  • Hello NancyAT

    It was very good to hear from you. I like hen's teeth as a description - my specialist nurse calls me special which I am not sure about.

    Like you I gave up looking for information as it was generally gloomy but also not always very uptodate. I hadn't heard about the clinical trial which I would have been interested in and I meet eligibility criteria. However I wasn't given info when I asked about possible trials and now it is too long after surgery. I will bring it up when I get opportunity. I just wasn't up to doing research at the time. Thank you for passing that information on.

    It is interesting the kind of follow up that they use. My oncologist said there was no way of assessing possible reoccurrence other than me becoming very ill. It was my surgeon who recommended regular scans but only because I was very anxious! This continues to concern me as does overall lack of information. It sounds like you have done as much as possible to investigate. If I do come across anything I will pass it on but seems unlikely. I am trying to neither too passive or too obsessive - a delicate balance.

    All best. Scan result good news.



  • FormerMember
    FormerMember in reply to Liliannie

    Hi there, my tumor was in the Ileum, extranodal, diagnosed after swollowing the PillCam.  I had no symptoms other than vomiting after eating.  I had a resection in Jan 2012 and put on watch and wait. It came back within the year in a node in the groin, no symptoms, showed on CT,  had that removed and was put on watch and wait.  Within the next year my PET showed spots above the waist around the kidney area and decided to treat with Rituxan/Bendamustine, I am now in remission since June2016.  Right now I am having fevers up to 100 more in the 99.6-8 range daily up and down, one minute a fever the next its 98.9, I am having hot flashes a lot at night an a little sweating, a whole lot of fatigue, but I also have Fibromyalgia so it's hard to know what is causing what although I don't think fibro causes a fever. So i am just trying to pay attention to my body and watch for anything different before I go to my Oncologist.  Good luck to you!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi fran please excuse my ignorance but what do you think is causing the fever? Are you on chemo ATM?

    Thanks dean

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Dean1987, that's just it, I don't know.  I finished maintenance in 2016 been in remission since then.  I am so worried the cancer is back somewhere else.  I don't want to go to see my oncologist until if or when I have another symptom, maybe fevers this low isn't considered a symptom?  I am curious to know if that sounds like cancer, I didn't have classic symptoms the other times.  

  • FormerMember
    FormerMember in reply to FormerMember

    Hi guys,

    How are you all doing? Mums 1 week into her 5th course of chemotherapy. The 4th course was harsh on her,made her pretty ill. This 5th course she isn't as bad touch wood. Shaky but not too many other problems.

    We had our first ct scan. The small bowel come back clear but there is a area of 'inflammation that they are slightly concerns about, it's in the peritoneal. We are hoping it's post surgery scaring from the operation but it could also be cancer. We have had a PET scan and are awaiting the results. 

    Best wishes


  • Hi @Dean1987

    Hope the scan results come back okay.  I had a bad time on cycle 2 and cycle 4 of six three week cycles. I lost a lot of weight and was sick a lot of the time. After cycle 4 the oncologists changed my treatment around and I had a three week gap because my red cell count was too low to continue.  That said, cycles 5 and 6 weren't too bad, partly because of the changes, and also having the end in sight!  It's hard when you are in the middle of it, but just over six months on I can hardly believe how 'normal' things are, just a little neuropathy now and then.

    I have my first six month check post chemo on 13th July, which is a year to the day of my first chemo.  I expect it to be a short conversation as they've said they don't intend to do anything further unless I flag any problems or changes.

    Hope the PET scan helps, I've had several CT and endoscopy but not PET.  In any case my attitude is that it is better to know and deal with things but still I hope for you and your mum that it comes back completely clear.

    Let us know how you get on, and hope the next cycles are easier to take.


  • FormerMember
    FormerMember in reply to Linds2016

    Hi everyone.

    Just thought I'd bump this forum and ask how everyone is doing? My mum took her last chemotherapy tablet of her 8th cycle last Monday so that's a milestone! We are on a bit of a watch and wait discovery now as ct scans have shown there are 2 tiny lumps on the peritoneum. PET scan didn't gleam cancer but another scan they did to rule it something else also come back negative, 

    They have basically said they need to keep an eye on the them. Frustrating but better news than it's definitely cancer.

    Anyway, how are you guys.