Stage IV small intestine newly diagnosed

Hi My_Girl

I'm so sorry you and your Dad are going through this. Do you know exactly where the cancer is, or has it metastasized into other organs? My husband is in his mid sixties too and has duodenal cancer - technically categorised as Stage 4. He had Whipple surgery to remove the tumour and when he recovered from surgery, a scan showed the cancer had spread to his liver. He was given 12-18 months but after a course of chemotherapy, his cancer has been stable for the past 12 months. [See my profile if you want the whole story] My point is, we were given a grim prognosis but his illness has not progressed the way the doctors thought it would.  We expected to be working on my husband's end of life plan by now, but he's still working and is asymptomatic of cancer. It won't last as he's still terminal - but we have stopped discussing what life will be like when he isn't here, we are making plans. Or will be when lockdown is over.

We were also thrown a curve ball last month when I contracted Covid-9 - I was intubated for three days and spent eleven days in hospital. Suddenly my family was faced with the prospect of losing me!

Things change - so don't write your Dad off yet. Give him time to come to terms with his diagnosis, and he will make the right decision for him. It's not easy watching someone you love go through this. Maybe you could join the Carer's Group where you'll be given some great advice - or you just want to rant - and you will.

Thank you so much for replying. What a positive story you have. All i know is it's small bowel i think there are a few tumors though & he's inoperable as the main one has wrapped around a large vein. It has also metastasized to his liver where he has a few smaller lesions. I think where they are in the bowel they sit on the outside of the bowel so if they get bigger could cause obstruction as they collapse in. He was very slim anyway but has lost weight since diagnoses due to loss of appetite and i think shock. So hard watching him deteriorate knowing they can not cure him. I think if there was a chance of a cure or some positivity he would have more umph for treatment. They have just said adenocarcinoma is common but not in the small intestine and that any treatment will only extend his life slightly so i think he's thinking well, what's the point

Ps, so sorry to hear about your diagnosis for covid, really not what you need, im so glad that you have  come through safely. Can i ask did your husband struggle with pain after eating and did they use steroids for his weight loss? Had he regained all his weight by the time he began chemo or was is still weaker?

Thank you for your help, really appreciate it x

My_Girl

My husband is 5/6" and before surgery he lost 50lbs. He was painfully thin and having his digestive system re-plumbed has caused a lot of digestive issues - so yes, he still suffers pain if he eats the wrong things or overdoes sugar and fat. But that is related to the Whipple surgery rather than the cancer.  The lesions which developed in his liver were shrunk with chemotherapy and are now 'undetectable' - again the doctors did not expect that. The fact they haven't come back again - yet - surprised them as well.

He refused chemotherapy at first as he was in so much pain and was on four-hourly Oxycodone - even taking a bath was painful as he had no body fat to cushion him. I think he gave up for a while and like your dad, thought what was the point? It too about four months for him to recover - but a Whipple is major surgery, but when he recovered and put on weight, he felt he could handle it at that stage and agreed.  It was worth it because he has had a year of being stable - not remission or cancer free, but he's bought himself time.

No, he wasn't given steriods, but he does still need Omezprazole, Docusate, Soluble Paracetamol, and Creon which helps him absord his food. He weaned himself off the Oxycodone - he says he's saving it for when he really needs it!

I know this is very scary for you and your dad. He's probably terrified but doesn't want to show it to his child. He has so many questions. How long do I have? Will chemotherapy make any difference or am I putting myself through it for nothing? How much pain will I be in? All the questions we asked when we received the diagnosis - You think, 'Well that's it then' but it isn't. 

I don't know where you live, but my husband has an excellent Pain Consultant who rings him every so often just to chat and offers advice even though he doesn't need her yet.

It might sound cheesy, but we have learned to live with cancer rather than dying from it. 

As for my Covid-19. Waking up in ITU wasn't fun with no visitors, and staff so wrapped up in gowns and masks it was like being around aliens as they all looked the same - Husband and I are in competition now as to whose hallucination stories are worse! Seriously though it was a bad time for him thinking he might have to face his cancer without me and I was worried I might have infected him. Actually he infected me but his symptoms were mild in comparison - who knew as he is the vulnerable one.

Good luck to you and your dad - and talk about it. It's important for you both.

Thank you so much for replying Sallypond i really do appreciate it. It's so isolating. Hearing from others really does help. I have joined the family group too.

Feel so scared for the future, living on a knife edge

I wish your husband well for his next scan x

hi really sorry to hear about your Dad

we are in similar position, its my Mum   she has stage IV duodenal cancer which is inoperable as too a major op we heard today that its moved quicker than originally thought so is starting chemo v soon.  I kinda wish she was thinking along the same lines as your Dad, as I am fearful that her time left is going to be feeling grim...but I guess we dont know how we would feel ourselves unless in that situation.  I will support her whatever she decides.   She was told today without treatment now it would be around 3mths as its moving much more aggressively than originally thought.   Just feels like such a gamble to take with either option.  From what I have read being able to have surgery really does help the outcome with this kind of cancer.

Hello Shona999

So sorry to hear about your Mum's prognosis, which must be so hard not knowing which road to take. Whenever we ask a question we are told that with this type of cancer is so rare, there is no definitive treatment as they don't have a clear idea of how it's going to progress.  Are you having any difficuly with obtaining advice and treatment with the NHS is so focussed on Covid?  My husband has three month scans but all he will get for this period is a telephone appoinment with his oncologist to discuss symptoms. I am fearful this won't achieve anything without a scan to see what's going on but none has been scheduled.

Hi Shona, So sorry to hear about your Mum. It really is a living nightmare. My Dad was due to start chemo today but he has decided not to. To be honest its the right choice as he is so weak & has lost alot of weight. I think chemo would have been horrendeous for him.

It's just about making him comfortable now for what time he has left with us. It's 5 weeks since diagnosis & he has gone downhill so fast they think his is very aggressive too. I still can't believe this is all happening   

Thinking of you & your Mum x

Hello Sallypnd, i was so pleased to read your post. My husband was  diagnosed with duodenal cancer as we went into lockdown and they couldn't do the Whipple as planned as it is too close to major arteries so he had a gastric by pass and is starting chemo. But he has lost so much weight and is so weak and fragile,  eating is a challenge, I am really worried for him. He has had problems with internal bleeding from the tumour which has put him in hospital several times and is very distressing. He is still determined to go ahead with the chemo. last week they did an embolisation to try and slow the bleeding, which was a partial success. He believes that all cases are individual so there is hope.

Being in isolation 24/7 with the fear and worry is starting to tell on me, i am his only carer  face to face, so I need to be strong. We have a good medical  team helping him, but communication and support is hard to get so i feel isolated from information... never had a leaflet of any kind. So glad you husband is doing so well with this horrible illness.

Hi Betaleonis

When my hsband had to gain weight but food wasn't an option, what with internal stitches after the Whipple etc. He was prescribed Fortisips, a liquid meal supplement which contains about 300 calories in each small carton. To make things even more difficult my husband is allergic to milk and they are milk based, so he was given Fortijuice! He drank 3-4 a day for three months and regained the weight.They really helped as he too was very weak and having lost a third of his stomach eating was a chore. The apple one was the ony flavour he could stand - and even began to like it. If your husband cannot eat, or he is disinclined to, these really increase the calorie intake. Ask your GP for a prescription.

The other alternative which we were told would be considered if this did not work was to be prescribed steroids, but these are a last resport and he didn't need them in the end.

Your husband sounds very strong as he must be in distress all the time and the treatment must take it out of him. I wish you both luck and do keep us up to date. There aren't many people on this group as this cancer is so rare so it helps to have other's personal experience to draw on.

Our local hospital still isn't doing scans, so now we are worried the tumors are growing again and aren't being dealt with.

P.S. Sorry I didn't see this, seems my e-mail notifications aren't working.