Small bowel cancer

It is so nice to find some people who are in remission.  I am stateside and could find very little about this cancer let alone someone in remission.  My husband is from the U.K. and suggested I look here.  I'm so glad I did!  It makes me feel much better!  

Of course!  Keep us updated on your diagnosis and progress.  We are in Milwaukee Wisconsin and had treatment at the Medical College of WI and Froedtert Hospital and they have the very best care for this rare cancer.  Hugh is now five years post diagnosis and is doing super!

There is hope!

Hi Liliannie,  Have you had any issues since your surgery? -Brandy

Hi there

I haven’t been in this forum for a long while now. I have been well for last 5 nearly 6 years following surgery and hope to continue to do so. I no longer have annual  CT scans  by hepato bilary department at BRI hospital in Bristol after 5 years but they will continue to monitor me for symptoms. I just had surgery ( no chemo ) to remove tumour in 2016  as that was all I was offered. However all has been good .

Best wishes to anyone who is going through this at the moment. 

liliannie

Thank you so much for responding to my inquiry!  I was diagnosed with adenocarcinoma of the small bowel (jejunum) in February 2022 after having a blockage.  Histology was T2N0M0 well differentiated with negative margins.  They've given me the option of chemo for preventative reasons and because I am 40, but they have no opinion one way or the other and the decision is rattling me to say the least.  My husband does not think the chemo is necessary, but is very supportive either way.  It's incredibly hard to find people in my similar situation so I really appreciate you taking the time to respond.  Did you have a lot of lymph nodes taken?  Or was it just the standard amount?  It seems to me sometimes they take more lymph nodes in the U.K. as opposed to the U.S.  I'm from the states, but my husband is British and his mum used MacMillan nurses when she had breast cancer.  I am so glad they told me about this!  Being in this group and chatting with other people in my situation has been so helpful!  I really, REALLY appreciate you getting back to me.  It does make me feel a bit better!  -Brandy

Hi Brandy

I am happy to talk about my experience. There are few people to share it with as it is a rare type of cancer. I would hope that knowledge and treatment options have improved over 6 years but maybe not.

My cancer was T3N0M0 and I was 64 the time. I can’t remember how many lymph nodes were tested now but they were clear. I saw an oncologist only once and his view was that there was no evidence that further treatment after surgery would be beneficial . This seemed to be because the cancer was so rare so that no one knew for sure. I think there were some trials going on at the time but I wasn’t part of them and don’t know if they gained evidence one way or the other. 

Looking back it worked out well for me and I didn’t have to go through an extended period of further treatment and recovery . However had I to make a choice I am not sure what I would have done. I was certainly anxious for some time.

Let me know what you decide and I hope it goes well.

Liliannie

Lili,

Yeah, it's a difficult decision...one I go back and forth with.  You wanna make the best decision, but unfortunately, there's just not enough out there to suggest one way or the other.  They've scheduled me for maintenance/surveillance at this point, but have given me the option to call them within 6 weeks if I decide I want to try the chemo.  I've decided to just live my life for a week or so with no focus on it and see how I feel.  If I feel anxious about the decision, I will go forward with trying the chemo, but it does make me feel better to know you didn't have treatment and are doing fine.  It's not that I'm just adamantly opposed to it, but I don't think anyone wants to go through chemo if they don't have to.  Thank you for speaking to me!  I appreciate it!

Brandy