Duodenal Cancer Newbee

My husband didn't feel any seriously debillitating symptoms, apart from discomfort from reflux etc until early 2018. He was admitted to hospital with what they thought was 'a blockage' but it took a while of tests to discover it was in his duodenum. His symptoms got progressively worse over the seven weeks he was in hospital and he developed acute jaundice to the point we all started calling him Bart! He lost 50 lbs [and at 5' 6" and not overweight that was pretty drastic] The reason it took so long for the surgery was they don't do Whipples here so he had to be treated at QE Birmingham and had to wait until they could fit him in - so as you can imagine he was an emergency when we did get him there. And I say we because there was no ambulance available so we piled him into the car, glowing bright yellow and with a PIC line, canulas and box of liquid feed and drove him the fifty miles.

The surgery went well though - all 10 hours of it, and he was in the gym the day after he came out of ICU. It's a military training hospital and they promote early exercise after surgery. Then sepsis hit the ward so they discharged him after five days and again - no ambulances - so said they would put him on a train! He hadn't eaten solid food for eight weeks and looked like a Belsen victim with 40 staples in his chest and two drains. Train? No way, so we brought him home ourselves.

We weren't told the tumour was cancerous until the six-week check up. Which was annoying. But the following two scans showed no signs at all. It wasn't until his one year scan did the cancer show up again in his liver. That was January 2019, and his latest scan, which was last month shows a >1cm tumour in his liver and a tiny dot in his abdominal lymph node but nothing else.

Sorry about the saga, but my point is after that nightmare, he is still working and reasonably fit, although he suffers from fatigue and the odd 'Whipple attack'. The Whipple has meant some alterations to his eating habits [i.e. taking ten capsules of Creon with every meal and avoiding fiber]  He is living with the cancer but not dying from it - yet. No one believed he would still be here after four years - especially his oncologist! So hang in there Chip. And keep us informed.

I have had IBS for years, it was never particularly debilitating, but about three years ago I had some slightly worse symptoms and blood in my stool and had a two week wait colonoscopy which was clear, they also noted slightly low Hb and prescribed a course of iron.

In Aug 2020 I was unable to give blood because of very low Hb. The donor centre advised me to see my GP to check out the cause, I mentioned to my GP that I'd had some v dark stool and he referred me two week wait to the gastroenterologists, who referred me for a gastroscopy, at first they thought I had a GIST, but biopsy showed adenocarcinoma, I had a CT scan which showed the tumour, but they couldn't see anything else alarming so I was referred to surgeons who advised Whipples, but wanted a PET scan to double check for spread. This showed regional spread so the op was cancelled and I was sent to the oncologists for palliative chemotherapy.

Throughout I have never had severe symptoms, though when my Hb was very low I had very little energy. Currently I am trying to build up my physical stamina, I lost alot during my chemo and with lockdowns etc I had far less exercise than usual. I have taken severe ill health retirement, though it has been mental distress rather than physical that have stopped me working.

I enjoyed my work and was sad to stop, so I don't think stress caused my cancer, there don't seem to be any specific indicators for this kind of cancer, though I am overweight, I do eat red meat and cured meats and I do drink alcohol, these are all things that can increase your risk of cancer I believe. 

Hi. I hope you don't mind me joining this thread. 

My husband was diagnosed with incurable duodenal cancer July 2021. He was very ill and it took 6 weeks for a diagnosis. He went down to 8 stone and nearly died. He had 2 stents fitted to help digest his food properly. 

We were told it is stage 3 and spread so couldn't have the whipple procedure.

He has had 12 rounds of chemotherapy and he responded well to this. The doctors are very pessimistic about his outcome. They have said 12 to 15 months .

I feel like he is being ignored now. The chemotherapy was palliative and now we can't get an appointment to discuss a treatment plan. Is that it? Does he just wait for it to spread and die? We are so worried 

So sorry to hear this Angie11, and I can honestly say I know how you feel - Blindsided, stunned and out of control. This is such a rare form of cancer and helpful information is hard to find. You say you cannot get an appointment, and I know this can be a postcode lottery, so where do you live? My husband was also told his chemotherapy for his Stage 4 duodenal cancer was palliative, but they said that twice and he is still here. Is your husband having regular scans to check on the spread of tumours? Have they told you more chemotherapy is not an option, and if so, why?. If the hospital aren't being much help, will your GP act as a go between? Be persistent, you need a plan and an idea of what to expect going forward. I cannot imagine his oncologist wants him to sit at home worried about what will happen next. That's cruel. Good luck and do keep us updated.

Hi Sally

Thank you so much for replying. We live in Leeds and my husband was treated at St James's Hospital in Leeds.

Like you said, little is known about this form of cancer. He finished his 12 rounds of chemotherapy about 5 weeks. We were told he'd have an oncology appointment to discuss a treatment plan within a couple of weeks. We didn't hear anything so that's why i called a Macmillan nurse.

We don't know what will happen next. More chemotherapy? Different treatments? Blood tests? Scans?

May I ask what treatment your husband had/having and how is he monitored? Does he have a treatment plan.

We feel lost.

Thank you for your time ️

Hi again Angie 11

If you look at my profile and through this thread and see my responses to Chip66, they will give you a clear picture of my husband's treatment since January 2018. He had his Whipple in February 2018 at QE Birmingham, and in January 2019 when the tumours appeared, was given 12-18 months - but he's not only still here, he's working, we have a foreign holiday booked for this year, and we are about to buy a house that needs some work. He's determined not to sit around and wait for this disease to finish him off, even though he knows he's terminal. That might sound flippant, and I'm not trying to minimise what he has to put up with, but most of the discomfort are side effects of the Whipple, he is asymptomatic of the cancer.

We know there will be a time when the tumours will grow and spread, but he responded well to twelve rounds of EOX chemo, six in 2019 and a modified version in 2021 - he cannot have that again but if they decide he might benefit again, he will have to have a different regime.

Maybe St James is one of the hospitals with a large backlog of patients and they are having trouble keeping up. That said, don't wait if you feel it's gone on too long. You were promised an appointment and now you want one - [I used to be timid and accepting too once. Haha] Keep reminding them you are there and demand the treatment your husband deserves.

I know it's tough, but knowing what to expect will help - Originally, I was told my husband had a small blockage and would need a stent! I went to have my hair done and walked in to find three consultants round his bed telling him he needed surgery more major than a heart transplant. Then our lives imploded - he turned bright yellow from the liver failure, and lost 50lb while we waited for a decision to do the Whipple [he's only 5' 6"] which turned into emergency surgery, which became 'Perhaps he's too weak to survive anyway'

It's surprising what you can get through when there is no alternative - so don't give up, either of you. The medics always tell you worst case scenario so whatever you get is a bonus. It's hard living with this cloud over us all the time, not being able to plan because we don't know what the next scan will show - but strangely, you get used to it.

Best of luck to you both and let us know how you get on.

Hi Angie, 

Since my treatment finished I have been having CT scans every three months, although I had a good response to treatment my oncologist is still pessimistic about my prognosis, he still says less than a year. So far my scans have shown no progression and I am a year post chemotherapy. So I am doing better than expected. My year is stretching! The plan so far has been to wait for change then decide how to respond. But as there has been no change so far at my last review my consultant said if the next scan still shows no change we will review the plan. I don't know what that might mean. My next scan is at the end of April. 

If you still have not heard from your consultant I would call or email their secretary and ask when your appointment will be. I contact my consultants secretary quite regularly to chase up letters and appointments. I also have liason nurses who I can leave a message with and they always get back to me same day or next working day. I am in Sheffield.

Best wishes 

Thanks so much for replying. I hear so many different stories about this cancer. 

Please can can I message you privately? Is that allowed? 

I have made a friend request, if you accept that will let us share private messages 

Yes, If you send me a friend request through your profile, I will respond and we can chat privately. Please do