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violette28
Posts: 4
Joined: Fri Jul 22, 2016 7:30 pm

Please help me, a newcommer

Postby violette28 » Tue Jul 26, 2016 9:36 am

Please help me with some explanations and advice! My dad got diagnosed with a growth on the pancreas 3 weeks ago, and had surgery 5 days ago. The surgery was successful, but very heavy. They cut a lot of his organs --part of the stomach, a bit of a vein, intestines pancreas, gall bladder, spleen. They told us that everything is cut out, and that there are no visible metastases elsewhere in the body. We are waiting for results from the biopsy and the doctors say chemotherapy will be needed.

We do not have a real access to his doctor, because he is operated in a military hospital so we do not really understand everything that goes on. We only know he is in a lot of pain right now.

Please tell me, with the chemotherapy and given a successful surgery, does he stand a chance of full recovery?

Will he need a special diet? how long before he stops being in pain? Also will it hurt from the chemotherapy? I read that there are different types of chemo, depending on the cancer cells. How long is typically the chemo treatment?


Also: just learned that his digestive system has not started working yet. What does this mean? It has been 4 days since surgery already. Is this very worrying?

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Please help me, a newcommer

Postby Dandygal76 » Tue Jul 26, 2016 11:49 am

Hi Violette

Your dad has a chance of full recovery and although unlucky to have this dreadful disease he is very lucky to have been eligible for the operation and there is every reason to be optimistic. I know that he will need to take Creon to digest food now but that will be given by the Dr. Chemo can be tough but there are good medications out there to help with side effects. I think W&M and Ruthus are better placed to advise you if they are about because they have dealt with Whipples. Please also call the PCUK nurses on their support line - they are really fab. x

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: Please help me, a newcommer

Postby sandraW » Tue Jul 26, 2016 12:14 pm

Hi Violetta,
Welcome to the forum the place where no one wants to be but where you will get lots of help and advise.
Is good that your dad was able to get surgery, and that it was successful, it is a very big operation
and his recovery will be slow, but hopefully steady.
Surgery is the only chance of full recovery and there certainly are a lucky few who have made it, lets hope that your dad is one of them.
My husband had successful surgery not quite as heavy as your Dad's he lost 2/3rds of his pancreas and his spleen, he was poorly for about 10 days then slowly recovered and was out pottering in his garden by week 4, he made a full recovery, but unfortunately the cancer came back in his liver and he died 19 months later.
As for a special diet, he will need creon the enzyme replacement as he has lost his pancreas, and because he has lost some intestines too that might also make a difference to what he can eat it might well be a case of trial and error but I am sure you will be able to get advice from a dietitian.
Chemotherapy usually lasts for 6 - 12 sessions after surgery, I am sure the doctors will advise which they think is the most appropriate in your dad's case,
I can't help with the question about his digestive system but the nurses on the forum are great they are available Monday to Friday and I am sure they will be able to advise you, they are very knowledgeable and very approachable, so give them a ring 0808 8010707.
I hope your Dad starts to feel better soon, please let us know how he is doing, take care sandrax x

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Please help me, a newcommer

Postby Wife&Mum » Tue Jul 26, 2016 12:29 pm

Violette
Welcome to the forum but I'm very sorry to hear about your Dad's situation, it must be a terrible shock still. As DG says, my husband has had a Whipple but everyone's circumstances are so different I hesitate to offer any general advice. Also, the specialist nurses here are excellent and they are a good place to start.

Very best wishes for your Dad's recovery

W&M x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Please help me, a newcommer

Postby Didge » Tue Jul 26, 2016 12:58 pm

Hi Violette, it may be that your dad did not have a Whipples but a distal pancreatectomy (the end of the pancreas rather than the head) as the spleen is often removed during this operation. If that is the case creon may not be necessary (my partner did not need it). It depends how much of the pancreas us left and how well it is working. I do not think it is unusual for 4 days to pass without the digestive system working after such major surgery. No doubt the nurses will pitch in with some medical advice in due course. Good luck, Didge.

violette28
Posts: 4
Joined: Fri Jul 22, 2016 7:30 pm

Re: Please help me, a newcommer

Postby violette28 » Tue Jul 26, 2016 1:42 pm

Thank you all very very much!

It was indeed a huge shock, since we are a family of 3 women and my dad, so there has been a lot of crying nervous breakdowns and so on. Also my dad lied to us in the beginning, saying that the doctor has said the he has a benign growth, so we only learned the truth after his surgery (22nd), and and it was extremely hard!

But now we feel better and very pragmatically oriented, trying to focus on everything that needs to be done to help my dad recover. It is very hard to deal with the statistics, but one just has to chase these thoughts away and stay sane. One of the hardest parts is that he is in a lot of pain, and also scared. He did not have any time to process this, as he was taken to surgery 2 weeks after the diagnosis. The wife of another patient during the visits told us that he argues with the doctors all the time.


I will ask which type of surgery he did have, I assumed it was Whipple's. We did not have the opportunity to do any research or ask any questions prior to surgery, since my dad lied to us and presented the situation very differently.

Dear Sandra, my deepest condolences for the loss of your husband. May he rest in peace!

Proud Wife
Posts: 733
Joined: Sun Jan 17, 2016 9:28 am

Re: Please help me, a newcommer

Postby Proud Wife » Tue Jul 26, 2016 2:13 pm

Oh Violette, what a terrible, terrible shock that must have been to you and your family.

Don't blame your Dad though, it is very evident that he wanted to spare you the pain and heartache this terrible disease brings to each and every one of us. Your Dad will be his own statistic, just concentrate on helping him through this as you are. As well as being in terrible pain, I am sure he must be in turmoil emotionally too.

You've come to the right place and there will be a wealth of knowledge and support here for you and your family for whenever you need it.

Take care because we care xx

I am sending you my very best wishes

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Please help me, a newcommer

Postby Ruthus » Tue Jul 26, 2016 6:43 pm

Hello Violette

I am very sorry to hear of your dad's diagnosis and what you have all been through. It must have been a terrible shock and has all happened very quickly. Your father has had major surgery but is lucky he has been operable as this is the only chance of full recovery. People tend to have varied recovery stories from surgery. Some will recover quickly and others it will take longer. From reading many stories I have found that each persons experience is different as with chemotherapy.

If he is experiencing a lot of pain it maybe his pain relief is not being managed adequately. I am sure the PC nurses will contact you and offer advice and support.

I wish you all the best
Ruth

violette28
Posts: 4
Joined: Fri Jul 22, 2016 7:30 pm

Re: Please help me, a newcommer

Postby violette28 » Tue Aug 30, 2016 5:32 pm

Hello everyone! Thank you very much for all your posts! My dad has mostly recovered from the surgery and is eating, although still has sometimes problems with his digestion and going to the toilet. His wounds are healing well and he even has power to go on some short walks. He has lost a lot of weight, but that is actually good, because he was overweight before.

However now chemo is due. We are very scared. His surgery has been a success, everything has been cut out, but a vein has been infiltrated and tumor cells have been spread supposedly. So we need to do 6 rounds of chemo. How hard will it be physically for him? Does he have a good chance now? I can never ask the doctors for any prognosis, since he is always present and I dont want to ask in front of him. His chemo starts on the 13th of September.

Dandygal76
Posts: 761
Joined: Sat Mar 12, 2016 9:49 am

Re: Please help me, a newcommer

Postby Dandygal76 » Tue Aug 30, 2016 7:09 pm

Hey Violette, there are so many different variations in PC that no one can predict your dads chance but he is in a better position having the op. Perhaps if you want to discretely find out the prognosis you need to ask them what grade the cancer has been given and then you will be able to google it yourself or speak to the PC nurses. The grading will tell you about the spread of the cancer more. I hope that helps but I have ltd knowledge of patients with whipple op. x