New and Confused....

[Sue]

Hello, my name is Sue and I am new to this site, as indeed I am new to pancreatic cancer. My Dad was diagnosed (without biopsy, but with tumour at head of pancreas, some symptoms and extremely high likelihood of PC) about five weeks ago. We went to the doctor because he had lost his appetite (unprecedented for him) and had lost a lot of weight over a relatively short period. An ultrasound showed a dilated bile duct, a follow up CT scan didn't show anything sinister, but a cautionary endoscopy showed a small tumour at the head of the pancreas.

We have been left with a difficult choice - the surgeon believed the tumour to be resectable and said that a Whipple could be performed, which 'may' cure him. However in view of his age and other health problems (his mobility is poor and he has a host of chronic conditions) they told him he needed to think about whether he wanted to go ahead with the surgery. We weren't given an awful lot of information to go on, but I have since googled like mad and found out a lot that way. My gut feeling is that the operation isn't the right way for him to go and his is the same (obviously I didn't tell him mine because he needed to make his own decision). However, he is still not ready to tell the surgeon that this is his decision because it all seems so final, and is therefore holding off on having to make it. The hospital have said he needs a CPX text before they will operate if he does want to go ahead, to make sure that his body can take the shock. He cancelled the first one because he wasn't well enough to go (although I think he wanted to get out of it) and has another scheduled for next Thursday. However, in the time that has elapsed since our consultation with the surgeon he has developed jaundice and has lost more weight, has back pain and has become weaker. The GP has sent his latest liver function results to the hospital to see what they want to do, as they may want to stent which will put back the operation anyway.

Has anyone here been in a similar position to this one? The decision regarding whether to operate or not is a horrible one to have to make, because he and we know that he will die before too long if he doesn't, but we also know that there is a significant likelihood that he could go through all the trauma and recuperation of the operation only to die anyway. Some days my head feels like it will explode at the responsibility of being involved in such a decision, so any help or words of wisdom would be gratefuly received.

And to all of you who are facing this dreadful disease which such courage and dignity, I would just like to say that you are amazing and I hope and pray that I can be as couragious for my lovely Dad as things progress. He himself is handling it amazingly well and I am so proud of him.

Sue

[Nardobd]

Hi Sue and welcome to our little "family".

It's quite normal to be confused at first - we all were! If you have questions which google can't help with, just ask because if we don't know the answers we can at least point you in the right direction.

When my husband, Ted, was diagnosed, I was devestated because his tumour isn't operable but I was told that some people who take chemo live longer than those who have operations and some people who don't have any treatment live longer than those on chemo. One of the greatest frustrations with this disease is that it is unpredictable and everything very much depends on the individual.

Overall, the only way to remove the cancer at the moment is an operation but that is no guarantee - some people who have the Whipples or other operations have recurrence. Chemo can slow or even stop growth of the tumour for a while but it does have side effects. Ted was lucky and didn't suffer many but others find the side effects intolerable. Eventually the toxicity of the chemo builds up and because of that it's usually restricted to a six-month course. Eventually the tumour will become active again.

There's no "right" decision - it's whatever is the right thing for your Dad. However, I do think it's important that you and your Dad have all the support you need whilst coming to a final definitive answer. Was your Dad allocated a specialist nurse? If so, why don't you book some time to go and meet with him or her. (S)he has extensive experience with pancreatic cancer patients and will have come across similar situations so that she can talk you through the repercussions of each option.

If no specialist nurse was allocated to you, ring the consultant's secretary and see whether something can be arranged to meet with one of the team. You need explicit and specific information to help you and it's so very important that you are sure you came to the right decision for your own peace of mind afterwards.

My thoughts are with you.

Nicki x

[Sue]

Hi and thank you both so much for your replies. We definitely do need to discuss with someone, and yes we do have a specialist nurse assigned to us. I think what has surprised us is the way we have been 'left to it' but from what I have read this is not unusual and one does have to be proactive in order to get anywhere!

We still think and talk constantly, but have decided to wait until after his CPX before taking it any further, because if he doesn't pass that then it will be academic. That is taking place this Thursday, if indeed he is well enough to go, which I have to say is looking doubtful. He is so tired, frail and weak that he is struggling even to get out of bed and get dressed.

Dad is 80 by the way, and a far from fit 80. He has only really lived a half life (despite many attempts on the part of my brother and I to get him out and about) since my mum died 4 years ago. He suffers with rheumatoid arthritis and ciatica (sp?) pain constantly. The thought of him undergoing major surgery scares me immensely because I cannot see him coming through it well, even if it is successful. At the moment he manages in his own home, with support from me. Will that be the case post Whipple if he has it or will he end up having to be in a nursing home? The effect on his quality of life, I feel, could be enormous. He says he doesn't want to be operated on, that he never expected to get to 80 and that he feels he has had enough, but he doesn't want to make that final call as it is just that - final.

Anyway for now we will just proceed to CPX and see what happens from there. Thank you for taking the time and trouble to reply - I am so grateful. I wish you all the best with your own experiences and look forward to more contact as things go forward.

Sue xox

[Guest]

Hi Sue,

Sorry to hear about your dad - such a miserable time I know. My dad became very ill with weight loss and jaundice last October and after a number of setbacks with tests and diagnoses was told he had a tumour at the head of his pancreas. It was touch and go as to whether they would operate as he was so poorly, and they thought at the time the cancer had spread to his lymph nodes so not worth operating. He was, pre symptoms, a reasonably fit 75 year old. But at the time of the Whipples op was increadibly poorly and weak. There were also problems with his liver which they suspected might be cancer but it turned out it was infection caused by the biopsy.

His recovery from the Whipples op was slow and he spent several weeks at a regional centre. This I think was largely due to the physical problems he had pre op but also because he seemed to 'feel' more vulnerable, afraid to get up in case he collapsed, afraid to eat in case his digestive system couldn't take it. He was sent home but was back within 48 hours due to an infection. He then spent another 3 weeks in hospital.

He was very scared about the op - and psychologically, it's shaken him so much. But has now recovered reasonably well physically and has started follow up chemo. Everything is fine for a while then he'll suddenly get a weird symptom and we don't know what it is. But there's a good network of nurses etc to ask for help. I know that he might not continue with this as symptoms are likely to get worse and they say it will give him a further 10% chance of survival long term. It is his choice though and whilst he's able to sit in front of a fire and watch football rather than laying in a bed feeling sick and miserable who can blame him.

Know sure what I'm trying to say really. I think for my dad he was sooo poorly at the time of diagnosis he was willing to try anything and just didn't want to 'feel' that ill anyway. Whereas I think if he had not felt so ill with the cancer he might have chosen to live with it and take what time he had left.

It's such a hard decision for your dad - but his quality of life is so important. They can do wonderful things in hospital and it amazes me what they actually do in a Whipples op! But he also has to mentally cope with the decision too. I'm sure he'll come to the decision that's right for him. The people on this site are great - although I don't post very often I follow how everyone's doing. So I would encourage you to continue using it for you x

C