Can anybody help me understand?

My wonderful step dad is due to have a whipple procedure tomorrow, the surgeon is fairly sure that it is a malignant tumor but has told us he is 80% sure that he can remove it. Am feeling like I am on an emotional rollercoaster at the moment with moments of high when I feel so positive he will be ok and then the desperation of the possibility of losing him. I'm finding it so hard to talk to anybody about it without totally falling apart. I'm finding the info on the various sites on the internet very confusing, if they can remove it and it hasn't spread(which they dont think it has) has he got a chance of being o.k or is the whipple just a temporary measure? I would be so grateful if anybody out there could help me! Thank you

Hello Emma

I'm sorry no one has sent you a message of support, or offered any information to help you understand what is happening to your step-dad. I held back, thinking someone else would know what to say to you, but since they haven't, I will just give you my thoughts, but I am certainly no expert.

First, it is definitely an awful shock to hear that someone you know and love has pancreatic (or any other) cancer. Your step-dad has been one of the "luckier" people who was able to have an operation to try and take the cancer away. Some people cannot be operated on and having the whipple, although a very serious operation, does mean the doctors must think there is some hope of the patient recovering. The key word is "try". They try to remove the cancer, but I don't think there are any guarantees that they can totally cure it.

There seems to be many diferent types of pancreatic cancer and if you keep reading the info on this site, and the Macmillan site, after a while it does start to make more sense. The site and type of the tumour seems to have an effect on the patient's survival rate, but everyone is different and no doctor can accurately say what will happen in the future.

By now, you step-dad will hopefully have had his operation and I hope it went well. Maybe you will have more news from the surgeon/doctors too. It is a huge operation and it is awful to see your loved one wired up to the monitors and drips etc, but it is amazing how quickly the weeks pass and you see them improving and going home again. Yes, it is then a long, long recovery time to build their strength back up again, and everyone will vary again, but what seems impossible one day is possible months later, if everything goes well.

Try not to think too far ahead. The best thing is to take a day at a time. You should have a specialist nurse who can help you with queries, or keep reading the good websites for info, like this one. Sometimes, too much info is overwhelming and you go round in circles wondering which bit will apply to your step-dad. Personally, I found the Macmillan info easier to understand that a lot of other sites on the internet. It's a busy site but covers all other cancers, whereas this one just deals with pancreatic.

I hope I've been a tiny bit of help to you, but most of all, I wanted to say - so sorry you are having to go through this, like the rest of us on here, and a lot of us will know exactly what you are going through, so you are not alone. Keep posting and let us know how your step-dad gets on. Hopefully, more people will respond later on.

Keep strong and positive and try not to think too far ahead.

Best wishes

Ellie

x

hello Emma

Just to echo what Ellie has said to you really - I do hope that you are all on the right side of this now and that your step-dad will be taking the first steps to recovery. Many people who have the surgery seem to go on to do well, it seems to me that slow and steady is the best option to take now. Make sure that your step-dad has all the support he needs to get eating again and most importantly getting his digestion, bowels in particular, working properly as this really does seem to be a major cause of set backs and a slow recovery. He may need to take pancreatic enzymes to help out. Don't be afraid to ask for expert advice from dieticians and the doctors looking after him - they seem to overlook this aspect all too often and only seem to remember to give the right advice when things have gone wrong. I hope that he will be able to build up some strength and get up and about fairly soon -if he was relatively fit before the surgery then this will happen more quickly. Don't allow yourself to be disheartened by some of the sadder stories here - everyone is different with this kind of cancer, some people do very well indeed for a long time, we just don't get to hear about them because (rightly so) they are getting on with their lives rather than sitting on the internet!

Remember there will be bad days and good days, just try to focus on the good ones rather than the others. Make sure the rest of you have someone to lean on too, it's very important not to take all the strain yourselves. There are people who can help out with practical things then you can spend more time just enjoying being with your step-dad as he recovers.

all the best X

Hello Emma

I've been reading about your stepdad,i hope the op has gone well and your stepdad is starting so slowly feel better.

As Ellie and Chinup has said take each day as it comes and also take care of yourself.

Keep posting on here because there are some very kind and supportive people on here,and believe me it helps.

Thinking of you and your stepdad

Lorraine x

hi!

He had his op on Thursday and it all seems to have gone as well as we could have hoped, the tumor was attatched to the vein so it was a little more complicated but the surgeon seems happy that he has removed it all, the scary thing is that apparently iy was very close to being inoperable which considering a month ago we hadn't a clue anything was wrong is very frightening! I really appreciate all your kind and helpful words, it's just a waiting game now i guess for the biopsy results.

I have had a chance now to read a bit more on this site and would just like to say a big thankyou for taking the time to answer my post when i know you all are going through such difficult times. I don't think i have ever felt such a rollercoaster of emotions before this, i feel like a scared child and incredibly grown up all at once, i can only cope by facing one day at a time because the enormity of it all is so overwhelming.

With love, best wishes, prayers and everything crossable crossed

Emma xx

Hi Emma

So glad to hear that the op went well. That's the first step over with now! Sometimes, you just have to be grateful for the positive things that happen, like the surgeon being able to remove the tumour, despite it being attached to a vein. It's no good looking back and worrying about what has happened. You have to look forward, and hope that every day brings an improvement.

Already, you are making a little more sense of what is happening and as you keep reading the info, you will learn a lot more. I think once you understand things more, it gets easier to cope with it. It's the unknown which is hard to deal with.

None of us want to be on here, but it does help to know you can share your worries and concens, the good bits and the bad, with others who are going through the same thing.

Stay strong and positive!

Love

Ellie

xx

My Dad has his Whipples operation in November 2008. Today he had his bloods tested and he's doing fine. - chemotherapy should finish in June 2009. The after effects of the operation wasn't half as bad as I thought it would be - he's just done a 9 mile recreational walk and is planning another. The only side effect is that if he overeats he feels uncomfortable and a little bit poorly. He can still eat and drink exactly what he did before (curries, alcohol included!) but he has to be a little restrictive on his intake. All in all things are going well for us and I am keeping everything crossed for the future.

Hi Emma

I had my whipple janurary 17,recovered well from the op and was home after 8 days unfortunetely that same night had a pulmonary embolism straight back to hospital for10 more days. Results from from pathology gave me a very good outlook staging the tumour at 1 with no spread or other involvement.

Having told you all that now a little history. I am a 47 year old male and I was diagnosed back in July 2008.I had an unsuccessful whipple beginning of August where my original surgeon thought he found the tumour too involved with the vein. Closed me back up waited for me to heal and started 4 lots of chemo and 30 days of radiation. At the end of all this treatment had further investigative tests and it was determined the tumour had shrunk enough and away from the vein for another whipple to be attempted. My original surgeon was unable to perform this second attempt because of family commitments over his Christmas break so he recommended another surgeon whom I must say was absolutely brilliant.He perfomed the surgery,performing a vein resecition just to give me very clear margins,was at my bed side twice everyday through both surgery recovery and the embolism recovery period.

Post surgery I have had a few problems with digestion of fatty foods but am taking enzymes that have helped. Also take gaseze which has helped almost eliminate stomach pain.Started chemo to mop up any micro nasties that might be lurking,2nd week now,and it has knocked me round something shocking ,but only another 7 weeks, which in the scheme of things is not a long time,considering I plan to live for at least another 25 years. I have 5 children ranging in age from 21 down to 3 so have a few weddings and grand children to look forward too. So I say bring it on the fight is not over but I have a real good shot.

Good luck to you and yours if you have any questions please ask and I will answer them truthfully from my experience.

He had a bit of a freak out early hours of Tuesday morning which resulted in him pulling out his feeding tube, they think it was a reaction to all the drugs as they had given him something to help him sleep! no harm done though infact they kept his tube out and started him on some clear soup and jelly. It's now Thursday and he is on to sandwhiches and omlettes everything seems to be working properly although we have to open the windows every now and again! All being well he is coming home on Saturday. We still haven't had the result of the biopsy so although we are so happy that he is recovering so well there is a big cloud over us at the moment. Your stories are a real inspiration and it's that fighting spirit Kezza that will ensure you see all those weddings! It's just small steps all the way and each step should be celebrated. We still don't know how much of anything was removed apart from the 'mass' and the part of vein it was attatched to, but just glad everything seems to be working again.

With Much Love

Emma x