Duodenal Cancer Newbee

Hi everyone. I have been on here before but not for a while. I have read through this thread and hope to add some encouraging words to those of you who are ill or a relative of a cancer patient.

I was diagnosed with a duodenal adenocarcinoma in May 2016 after a period of time when I suffered from low iron levels. I had nearly died from a bout of double pneumonia in 2014 and was seriously overweight. It took a long time and a lot of pushing to get a diagnosis and we were not happy with my GP for not spotting the issue sooner. Following the diagnosis I had six rounds of chemo (Folfox) from May to August 2016 to attempt to shrink the tumour, but this had little effect; so I had major surgery to attempt to remove the tumour in September 2016. Like one of the the other contributors above, this was not possible as the tumour was too bound up with blood vessels. My surgeon afterwards gave me 6-12 months to live as he had not been able to remove it. This was obviously very bleak at the time.

From June to September 2016, I had not been able to eat solid foods, which simply made me vomit repeatedly; this did not improve even though the surgeon had created a by-pass from my stomach around the tumour. So in October I had a stent inserted through the tumour and the duodenum; since then I have been able to eat a restricted diet (no 'pieces' of meat - mince is ok -, no bread, tomatoes, nuts). We choose carefully in all food outlets and the stent has worked well, even when a part of it broke off in 2019 - that was a painful day!

So the good news is that, six years later, I am still here and reasonable healthy. The only 'treatment' I have had since 2016 is a regular consultation with my oncologist and a CT scan every few months. The cancer has never spread and does not affect any other organs. At the last consultation (by phone nowadays), the oncologist was so encouraged by the CT scan - on which he struggled to see any tumour - that he has changed our 'meetings' to every six months (from three) and a CT scan every two years (from one). He says that I will know myself whether I have a problem!

The last thing I want to do is gloat. Rather, I want to say that you can live for six years with this disease and be relatively well. I have more problems with Parkinson's (since 2019) and a bad hip until I had a new one last June. Until the pandemic we went on regular holidays and a cruise. Best of all, within eight days of the diagnosis, I married my wife (yes, you can organise a wedding in a week) and she fights every inch for me - and you have to do that! Like Sarah above, I have been treated in Sheffield, and have a superb contact nurse who 'resolves' issues such as the broken stent.

Please reply if you want any more details. Yes, there are not many with this cancer but I have been lucky enough to live with it for six years.

MalcolmH, your story is very encouraging, though your diet does sound very restricted. I was told that whipples was the only surgical option. I am currently awaiting the results of a PET scan to see if it is worthwhile referring me back to the surgeons. My best hope is that they say there is nothing to operate on. My fear is that it picks something that was missed on CT which is what happened last time I had a PET scan.

Whatever happens I am doing so much better than expected and I am thankful for that. 

Sarah. Thanks for replying. The diet is very restrictive and it particularly emphasises how cafes, pubs, etc. have very bread-based menus.

One thing which always surprises me on this site is how people with similar cancers are offered different treatments. I know about the Whipples procedure but it was never suggested to me. Similarly I have never had a PET scan and do not really know what it is. I suppose (hope) there are always good reasons for the differences in treatment but you do wonder.

I hope your PET scan is clear for you and that you continue to do well. 

Malcolm