Husband has cancer of the duodenum

Dear kitty, I noticed you had not received a reply as of yet and this may be due to duodenal cancer being quite rare. I’m so sad to read you are feeling so lacking in support, it sounds as though you don’t feel that you have been informed as to what happens next in your husband treatment and only having access to your consultant in clinic is compounding the problem. My advice is to go with your husband  to see your general practitioner and tell him of your concerns about the swollen stomach and ask him to contact your consultant to get advice and reassurance. I find you have to press doctors quite firmly to get the full picture surrounding your illness as I think they are reluctant to overload you with to much information in one go, as they quite often don’t know how things are going to pan out in individual cases of rare types of cancer. Never be afraid to ask questions because you will feel more in control if you do. I hope this helps  in some small way. 
best wishes 

jane

Hi Kitty. I have followed this forum occasionally for several years but never replied to anyone before. Adenocarcinoma of the duodenum is very rare, hence (probably) the absence of replies to your post. The next thing to say upfront is that everyone's experience of cancer is different so I can only say a few things which may help. The other initial comment I would make is that you have to 'kick' your GP and hospital staff hard and often to get the help you need. Finally I hope I don't come over the wrong way as I have been lucky despite being in a terminal situation.

I was diagnosed with cancer of the duodenum in May 2016. After a course of chemo to try to shrink the tumour, which had only a marginal effect, I had major surgery in September 2016 to try to remove the tumour. Although my surgeon is excellent, he could not remove the tumour as it was tangled up with major blood vessels. He then gave  me 6-12 months to live, but 3 and a half years later I am still here! Regular CT scans have shown no real growth or spread of the tumour so it is only growing very slowly, especially as it was probably there well before 2016.

We guess this was the case as I was anaemic for over a year before the diagnosis. My haemoglobin figure was below 90 consistently. My GP should have spotted that this indicated bowel cancer but he did eventually refer me to a hospital haematologist who arranged for me to have iron infusions and who then pushed until I was diagnosed. I now take ferrous sulfate tablets to keep the anaemia at bay. But, as I said above, we had to push for all this. Unpalatable as it may be to think of terminal cancer, being defined as such by my surgeon, and three years later by my GP, has allowed my wife and I to receive PiPs from the DWP, to have a Motability car and a blue badge. We want to live well while we can.

In the last year I have also been diagnosed with Parkinson's and an arthritic hip but we still feel lucky. If any of the above seems relevant to your husband's cancer, please reply and I will try to help. Keep fighting for what you need.

Malcolm

Hi Malcolm

Thank you for sharing your inspiring story. Someone very close to me has just been diagnosed with duodenal adenocarcinoma with Mets in the lymph nodes, liver and pelvis. 

Did you also have adenocarcinoma? Curious to hear more about your treatment throughout your journey.

Thanks in advance 

X 

Hi

As Malcolm has already said, this type of cancer is rare so you might not get many people with experience. My husband was diagnosed with adenocarcinoma of the duodenum in February 2016.

He underwent a full Whipple Procedure and although offered chemotherapy straight away, his recovery was pretty rough so he opted to wait until he was stronger. At this stage the tumour was contained with no spread or lymph node involvement. His consultant was sympathetic and said due to the lack of case studies, they have no evidence that chemotherapy is effective.

After reading your story I feel like sometimes life is really pathetic to deal with! I feel like you're really brave that you're beside your husband all the time and taking care of him in his worst time. At this time your husband needs your mental support to cope up with the pain that you're already giving him.

So, I wish you good luck for the upcoming CT scan and I hope the results will be good so don't worry and be positive! It is said that positive things happen when you think positive!

Hi Sally,

Thank you for taking the time to reply with such detail. It's really helpful to speak with other people who understand and have gone through a similar experience.

I will be thinking of you and your husband ahead of his next CT scan.

I am still in shock at how this horrible disease can appear out of nowhere, in our case, completely asymptomatic until obstruction.

I wish there was more research available - I feel the consultants we have met so far are pessimistic and don't have expertise in this area.

Hello Malcolm! Many thanks for your reply and many apologies for not replying sooner. Your message landed in my inbox during a bad time for my husband, so I didn’t spot it and it got buried. Only noticed it when others joined in the conversation recently. Firstly, I hope you are still doing OK. The diagnosis of Parkinson’s and arthritis must have been a blow. Life is really unkind to some people, piling on extra illnesses when you’ve got enough to deal with.

Your reply has given me hope. Also my husband is doing really well at the moment. He had 2 hospital admissions in November when his hb went really low again. First time it went down to 66 and he was given 2 blood transfusions and sent home with a hb of 76. They mentioned at this time that there was a drug that could help with the bleeding but it has the risk of causing DVT, so they didn’t start him on it. Said that he ‘wasn’t there yet’. Two weeks later he went down to 56, so was admitted again. He had 2 more transfusions and they decided to start him on the drug - Tranexamic Acid. Since then his health has improved steadily to a point where he is now feeling better than he has been for years! His hb was 118 at his last test a couple of weeks ago. He still struggles with fluid retention, probably due to heart failure, and has to take strong diuretics to keep it down. He is now eating normally, has put on weight in all the right places and lost it in all the right places. Life is good! We get out and about, enjoy each day, laugh a lot.

I have tried to be philosophical about this and achieve it most of the time. We all have a terminal condition - life! It will end for all of us at some point. Hopefully I can stay well enough and alive for long enough to look after him if and when he needs me.

Since the summer he has no scans at all. The last one showed some growth of the tumour and that was when they suggested some radiotherapy which they hoped would knock it back and help with the bleeding. He had 5 sessions and he was very poorly during this and for weeks afterwards. They didn’t suggest a scan to see if that had worked. Obviously it didn’t help with the bleeding, because he ended up in hospital in November. 

At his 2nd discharge in November all sorts of things kicked in. He was seen by an Occupational Therapist and got referred to our local team. He was also referred to our local hospice community team. The OT team have come in and fitted railings inside and outside the house and got him a chair to use in the shower. One of his big problems unrelated to the cancer is his mobility and balance. This is due to arthritic conditions related to diabetes. All of this has helped with quality of life.

The hospice community nurse has visited a couple of times and would come anytime we needed him. He fast-tracked an application for a blue badge and also applied for Attendance Allowance for him. We are getting State Pension, so don’t qualify for Pips. Getting the blue badge has transformed our lives. We can go to so many places that we couldn’t before. We bought him a mobility scooter that comes apart and fits in the car and off we go!

We decided to install a stair lift in the house and one outside to get him up the steps. One of the companies who came suggested that we shouldn’t be paying for this and gave us the name and number of who to contact at our local District Council. They have given us grants to fit these lifts and they weren’t means tested. Amazing! The internal lift was fitted some weeks ago and has been life-transforming for my husband. He loves playing the guitar, recording stuff, playing with effects pedals etc and has one of the bedrooms full of his music equipment. Because getting up and down the stairs was such an effort, after coming down in the morning he didn’t go up again till bedtime. Now he is up and down like a yo-yo! He can spend as much time as he wishes doing what he loves - making music! This has helped enormously with his mental well-being. 

He had an oncology appointment in December and they said that there was no need for further appointments, as they are not considering any further treatment, but that we could get in touch if we needed to. Something happened to me at this appt. Not sure of it was the notion that they had basically washed their hands of him, or what. The Macmillan Nurse stayed and chatted for a while and something she said - some kind remark or other - caused me to break down. I had been doing so well. My husband hates to see me upset, so I have made sure that he didn’t see me cry. The flood gates opened and I cried for days and nights. The Macmillan Nurse suggested that I visit their local centre where they could offer me support. I did this and it was useless! Not their fault. The Centre Manager was off long term sick and there was one women there holding the fort who seemed to be in as much of a state as me! They were about to close for a month for refurbishment. All the online help she suggested I accessed wasn’t there, but the useful thing she did suggest was that I got in touch with the hospice team. I did so and was immediately referred. One of their councillors even saw me on Christmas Eve! It was so good to talk to someone who told me how important I am and how I need to look after myself. I’ve been having some complimentary therapies there too to help with the stress. They have said that I have a ‘full bucket’ and just one drip into it will make it overflow. This is so true. If life ticks along on an even keel, I do OK. If something out of the ordinary happens, I crumble. 

So, a quick shout-out to the partners of those affected by a terminal diagnosis. You are important. You need to take care of yourself. You need to tell people that you are struggling and get all the help you can. You need sleep. You need to take time for yourself. Do the things for yourself that you have been putting off doing because you have been doing all the caring. 

Malcolm I take your point entirely about standing up for yourself with doctors. When hubby was really sick in November and knew it was because of low hb he knew that he needed a blood transfusion. I contacted the Macmillan Nurse at the hospital and she told us to go to A&E as this was his only route ‘into the system’. One of hubby’s biggest problems is that it is really difficult to get blood out of him and getting a cannula in requires the vascular access team. At A&E we told them this time, after time. However, each nurse and doctor he saw said ‘I’m really good at this, I can do it’. On his second admission, he was in there for 11hrs before anyone had been able to take enough blood for them to test to discover that his hb was indeed dangerously low! When we saw the oncologist for the last time, I said that there was no way I wanted this to happen again. They have now set up a permanent prescription for him for a blood transfusion and if he gets low again I just need to phone the nurse and he will be admitted to a day clinic for an immediate transfusion. It is appalling to think hat his hb had been going down over a long period of time and no-one had picked up on it. He had regular blood tests for his diabetes, but it was never mentioned. He could have had an earlier diagnosis, but not sure how beneficial this would have been.

i do hope that more research is done into this form of cancer so that others may be helped earlier.

best wishes to you Malcolm and all others in the same boat.

Kitty

Hi to all on this thread.

It's good to hear your replies after my recent post and to be able to compare experiences. It's especially good to hear from Kitty that her husband is now doing better. I have put together a few thoughts on various topics which may help.

Firstly, Butterfly2008 wanted to know more about my treatment for my duodenal adenocarcinoma. After diagnosis in May 2016, I had 6 rounds f chemo at 3-weekly intervals. The treatment was called FOLFOX, a combination of the drugs Flourouracil and Oxaliplatin. I had a PICC line inserted in my upper arm to administer the drugs over time. The aim was to shrink the tumour pre-op but the treatment had only a minimal effect. I was lucky in that I had few side-effects - I still have the diary - apart from sickness and neuropathy (numb and tingling feet which I still have). I was prescribed a number of anti-sickness drugs and I still take 2 domperidone a day.

The sickness was caused by the tumour blocking my duodenum (bowel) which meant that I could not really keep any solid food down. I was effectively on a liquid diet for several months and had a week in hospital in June when this was at its worst. I did have some minor tumours in the nearby lymph nodes but these have never spread. During a major but unsuccessful operation to remove the tumour in September 2016, the surgeon put in a bypass between my stomach and the bowel below the tumour. This did not work at first as I was still being sick, so in October I had a 12cm stent (thin mesh tube), inserted orally, through the tumour to keep the gap open. I still do not eat most meats, breads, fruits and anything else which may block the stent but I am now never sick. We choose my diet carefully but I can eat cakes and biscuits! Incidentally, as dark humour permeates these postings, 5cm of the stent broke off at one point. There is only one way it can get out and, boy, do you know about that!

I read above and in other threads about a Whipple Procedure. This was never mentioned to me and I've always wondered why. I would be interested in the circumstances when this op is appropriate.

One of the most difficult aspects of continuing treatment is the knock-on effects of treatment and the tablets I take. The neuropathy is very annoying when linked to the effects of the Parkinson's and the arthritis and means I walk badly. We have started to use mobility scooters to allow us to get about more quickly and further. Many of the tablets I take cause constipation so I take Laxido powders but these give me a lot of trapped wind and bloating; I was recommended to take Peppermint oil and this seems to help. I had a mini stroke (TIA) during the major op so I cannot now have a new hip operation as it is considered too risky. I also suffer from sleeplessness and take sleeping tablets every three days which my GP allows; he has suggested an alternative tablet but this would affect my anti-sickness tablets.

Finally, a couple of ideas for helpers: the local district nurse team offer support and they ring me once a month to check how I am - I also have type 2 diabetes, which is part of the reason for this. It's helpful for getting little tips from a sympathetic professional. You may also have a local Cancer Support Centre attached to your hospital; ours have been very good for advice and excellent in filling in the forms to get benefits, etc - they know what to write!

Good luck in the ongoing struggle. If I can help at all, please reply.

Malcolm

Hello to all taking part in this discussion. Kittypuss, Butterfly, Malcolm, Lyana, and Johnty and thank you to those who have offered me encouragement.

Malcolm as far as offering a Whipple procedure is concerned, I am not sure of the criteria but you mention you have diabetes. AS part of the pancreas is removed during this surgery maybe the medics did not regard it as appropriate in your case. My husband now has to take 12 capsules of Creon enzyme with each meal to absord his food as his pancreas [what is left of it] doesn't produce it . Also if the tumours had spread to other organs they might rule it out. If you look at my profile I have described what the procedure entails. My husband likes to know what is going to happen to him so he watched a videoed operation online beforehand - ewewww I can hear you say - we did!

My husband also has neuropthay which has made his middle toes completely numb - he says one more and he'll fall over! He wants to play the guitar too but it affects his fingers too so he can't.

I sympathise with Kittypus and Lyana, Butterfly with all you are going through. Life really sucks doesn't it? I won't say it's as bad for me as it is for my husband, but no one in our family dares complain of any discomfort or illness because it's nothing to what he has to deal with on a daily basis. If he moaned we could tease him but he's incredibly stoic.

He had the February scan and now we are awaiting the results on 12th - and hoping we don't get a telephone call from his oncologist telling him to come in immediately - then we know it's bad news.

Thinking of you all

Hi, Sorry to hear that! It is really hard to see your loved one in so much pain and life is really miserable sometimes. It plays around us and made us live with the pain. You're really brave that you have not left the side of your husband and giving him full support and love. Keep doing that and take care of yourself as well.

I really hope that you'll not get any bad news from the oncologist. 

Best Wishes!