Advice Post Operation

Hi,

My dad has recently been diagnosed with PC and is having the Whipples op on Christmas eve. His spirits seem quite low going into the operation, unsurprisingly, after months of extreme jaundice, weight loss etc and I know he is scared about what's going to happen. Whilst a difficult time me and my family are pleased that the operation is a possibility and I know that others are not so fortunate.

I was hoping for some advice really on realistically what's going to happen post op - is this operation really a cure or is it likely that the cancer will return somewhere else? And is my dad likely to return to 'normal functioning' i.e. have the same energy, weight, etc as he had pre illness? He thinks this is an alternative to chemotherapy but I doubt very much if he will not need chemo at some point although no one has really said this to us yet. The doctors overall have been great although fluctuate between slightly too vague or a bit too blunt. I feel I need to know what's likely to happen so that I can properly support my dad, manage his expectations and also support my mum and the rest of the family.

Any advice really appreciated.

C

Hi C and welcome, although I wish no one had to use these forums!

My husband Ted has PC although he wasn't lucky enough to catch it in time for a whipples. You may want to read or post on the surgical section of the board to get specific information on the op itself. Your Dad must have been feeling very unwell for quite some time, although that can to be symptomatic of the jaundice, not necessarily the cancer itself.

Post-op it's quite usual to have chemotherapy to "mop-up" any nasties which are still around. This is known as adjuvant chemotherapy and the thinking is that this provides a better long-term outcome for patients who have a whipples. If a tumour is very well defined and the surgeon is absolutely confident that they have every microscopic cell then sometimes chemo is not ordered, on the basis that it's better for the patient not to have to suffer possible side-effects. After the surgery you will need to speak to the surgeon to ask whether they are recommending chemo for your Dad because they won't know until they have actually done the op.

If your Dad does have to have chemo, you will probably need to reassure him that it's not like it used to be. Ted had a bit of nausea and tiredness with a little hair thinning - nothing that he couldn't cope with. I know that others have had greater side effects but even so the early days of chemo had horrendous side effects which have been controlled or erradicated as much as possible now.

As to whether the op is really a "cure", that depends on what research/text you read. There are a number of people whose stories are on the main website (pancreaticcancer.org.uk) and who have and are posting in these forums who are a living testament to the fact that the operation provides complete remission. There are others who weren't so lucky. Pancreatic cancer can be very aggressive and either return in the same area or elsewhere. One text I've read (which is a little outdated now) said that the majority of patients would have a recurrence somewhere in the body. Other research points to significant long-term success rates.

The one thing you can guarantee is that PC will never, ever be predictable! Individual strength of will, physical and mental stamina, medical treatment, clinical trials and many other factors will all play their part. One of the hardest things I've had to learn is to take each day as it comes.

After a period of recuperation from such major sugery, your Dad is likely to improve and may return to "normal functioning", although that will likely take some time. I think I read somewhere on the surgical board that a patient was told to look at around the two year mark for complete recovery from the operation (although don't quote me on that - my memory is not what it was!). The important thing is that the changes may be imperceptable if measured day by day but may be considerable week on week and month on month.

Apart from general encouragement to your Dad there are two really important points:

1. If you are worried about anything at all, contact your Dad's consultant or specialist nurse. Don't wait to see if it gets better or worse, don't "give in" because your Dad thinks it isn't worth bothering about. Speak to someone. If it's nothing to be concerned about, at least you'll have peace of mind and if there is something which needs attention then your Dad will get that attention sooner if you phone. If there's a side effect (op or chemo) which is causing your Dad discomfort then there's probably something they can do about it. I can't stress strongly enough that if you feel you need to get advice on anything at all, contact the specialist nurse, clinic, consultant or GP - anyone who you think might be able to help.

2. Carers such as you, your Mum and the rest of the family need support too. Don't get so caught up in giving support to others that you feel you have no one to turn to. There will be times when your Mum is depressed or upset and you'll comfort her - trust her to do the same for you!

I'll be thinking of your Dad on Christmas Eve. Do let us know how he gets on.

Nicki

Hi C,

Welcome to the forum, sorry about the circumanstances - and I hope we can help you with any questions/advice or just be here for you for a chat x

Most PC treatment documentation will state that the whipples op is the only possibility of a cure, a slim one. There are PC surviviors (5yrs+) that had the op, the chemo/radiotherapy and luckily that was that, it can happen.

I myself had the op 22months ago, but unfortunately my cancer has returned.

This is a basic/rough outline of what things may be like, op - post op.

Your Dad may be in hospital for 2 weeks or more, depending on how he recovers.

The op takes roughly 6-8hrs.

When he awakes, he will probably have about 4-6 tubes coming out of his abdomen, an epidural, a catheter, a tube up his nose direcly into the stomach (draining any fluid) - infact, it can look quite frightening - I felt like a marionette!

He may have staples across his tummy - they look worse than what they are, mine didn't hurt - even when I had them removed (44 of them).

The first night will be spent in Intensive Care, then he will be moved to the High Dependency Unit for 3 days - then onto a ward.

He will not be allowed to eat until he has successfully performed a bowel movement - which can be tricky as your bowels go to sleep post surgery and take a while to start up again. I wanted to eat the moment I came around from my anaesthetic

Once the epidural is removed, he may be fitted with a PCA (patient controlled anaelgesic - usually morphine) which he can press himself when he feels he needs added pain relief (he will be on a cocktail of painkillers administered by the nurses - this is just a 'top-up').

When they think it's safe to feed him, he may start off on nutritional shakes/soup - anything liquid.

The sooner your Dad can get up and start walking (he will need a stand to attach all his bags to etc) the sooner he will start to build his strength up. The longer he is in bed the more atrophy he will experience - moving will also help wake up his bowels.

He will get very bored in hospital, so make sure he has something to do. The first couple of days he will be mostly out of it. By the time he reaches the ward he may be awake for longer periods of time so I would suggest an MP3 player with some audio books on them as he may find it difficult to focus on a book with all the painkillers. An mp3 will also drown out the other patients if your Dad is trying to get some sleep

When he is able to take fluids, make sure you bring him some straws as sitting up is very difficult/unfomfortable to begin with.

He will not be able to wash, so take some baby wipes - it will help him feel fresh and are easy to use & throw.

Attach plastic bag to the side of his bed or table so he can put them in without having to try and get them in the bin.

I would also take some disinfectant wipes (I did, but still contracted C.diff whilst I was there)

Make sure he pays attention to what nurses are administering medicines, changing his cannula etc - he needs to be positive they have washed their hands before touching him.

When he is strong enough to go home, some of the abdominal tubes will be removed. Some will remain, just incase of complications - but will be removed after about a week/10 days of being home and everything going smoothly.

My appetite returned to normal straight away, the first night home from hospital....I had a take-away Tikka Massala.....although....I may be the exception on this one! Some people find they cannot tolerate certain food tastes/smells like they used to - this will be a slow learning curve. Start with small meals - like child portions, maybe every 3hrs if he can manage - easy to digest foods too, try to stay off red meats in particular as they are the hardest to digest.

As your father is having part of his pancreas removed, it may not make enough digestive enzymes for him to properly digest and absorb all his food. He will need to have CREON capsules, they are obtained from your GP - but initially they should sent you home with some to start you off. This will help your Dad regain weight, as a lot of the weight loss prior to surgery is related to the Pancreas failing to make the enzymes already. There is a small possibility he may develop Diabetes.....I didn't.

When your Dad has recovered sufficiently from the operation (usually about 8-10 weeks) he may start a course of chemotherapy. This may be Gemcitabine or Gemcitabine and Capecitabine. Gemcitabine is by infusion into the vein, once a week. Capecitabine are tablets taken every day. Compared to other chemo's - it is a well tolerated regime, with mild nausea and slight hair loss - but he will feel tired, more so as the course progresses. There are other rare side-effects, but each person is different so impossible to truly say how he will react. I would guess he would do 3 months of chemo, followed possibly by some radiotherapy.

I found the radiotherapy much easier, no side-effects except for the tiredness - and the sessions are quick and painless.

I was told I would never put weight on, I had dropped down to 7stone - maybe under. My whole body shape had changed and I even went out and bought more or less a new wardrobe and gave my old clothes away......then I put weight back on (and put the short skirts away!) - and got back up to a health 8st 10.

Your Dad may not put weight on for several months as the body's metabolism is high and working hard during the recovery/repair phase of the operation - so don't worry too much about his weight for atleast 3-6 months.

I can see I have waffled on after promising to keep this basic and rough........doh.....sorry! I will end it here, but if there is anything you want to ask me, please go ahead and i will do my best to answer, if you think your Father would benefit from talking to me on the phone - let me know and I will have my number emailed to you.

Kind regards, and wishing the operation to be straight forward and successful - with your Father making a speedy recovery over the next 2 weeks.

Juliana x

Wow - thank you all so much for taking the time to reply. It has really helped me to feel not quite so alone. Of course, I'm not, but the last few weeks / months have been a real rollercoaster and it's really helpful to talk to people who understand xxx

Nicki - I think it's really good advice about calling the conslutant if we're unsure about anything. The consultant at the local hospital has given us his mobile number and has been there when we've needed him so far. My dad's having the op at a regional centre but I'm sure I'll be able to contact the local guy if we're concerned about anything. That's what they're there for after all.

bw - looking at the bios has helped - it's hard to maintain a blance between being hopeful and reaslitc - I seem to sway from one to the other almost hourly in an attempt to keep positive yet being prepared.

Juliana - so sorry to hear your cancer has returned and I hope you have all the support you need. I've noted the MP3 (will download some books I thnk) and the baby wipes as when he previously went in for scans / endoscopies etc he hated not being able to shower afterwards and needs to keep himself occupied.

I'm feeling a lot stronger today although anxious. I'm going to try to persuade my mum and dad to go out for lunch (not that I think he feels like eating much) but think it's important he goes into hospital this afternoon feeling as relaxed and as positive as he possibly can under the circumstances.

Thanks again - I'm sure I'll be in touch after the operation. I sincerely hope you all have a peaceful Christmas with friends and family.

Cx

My Dad was 74 when he had his Whipples operation and as Juliana states, he had a fair amount of tubes which looked pretty uncomfortable, but he bounced back very quickly. The operation took something like 12 hours and it was deemed a success, so much so that he was out of hospital within 7 days. My Dad went on to receive chemotherapy, 3 weeks on then 1 week rest. He didn't have any adverse effects from this treatment and went on to take his chemotherapy sessions for 6 months with no loss of hair nor nausea (he was given Gemcitabine). My Dad needed to take chreon to assist his digestion and had a sore tummy for some time but nothing that really bothered him too much, in fact he was fitter than the rest of the family for a considerable amount of time until it all went wrong. My Dad coped for 9 months post Whippples but died at the end of June 2009 but that wasn't due to the cancer. He felt unwell with a temperature but didn't tell anyone, that cost him his life and he died of scepticemea after 7 weeks in hospital. The Whipples is the only way to cure PC and, like others on this site have already said, you need to take every day as it comes. Just take advice that post chemotherapy ones immunity is very low and any ailment should be treated without dealy. Gill X