Not sure what to think....

[jjsmith85]

My Dad started to be ill around 56 weeks ago after a fall in the garden. He is 79 years young and was very active. He started just feeling unwell, fatigued, weight loss and then the jaundice followed with diahorreah but no pain. He was referred to a general consultant and after ultra sound scans and MRI it was shown he had a lump at the top of the pancreas which was pushing agaist the bile duct so not allowing bile to flow. He then had the ERCP and a stent was inserted into his bile duct (plastic temporary one) to allow the bile to flow. They also took some brushes of the area but to date we have had no results of this. The other day we received a letter from the consultant updating his GP saying that she is investigating pancreatic cancer, Dad says she never said this to him but to be fair he does seem a little confused of late so I have no clue what to think. We have had no formal diagnosis and he now has to go back to hospital to have a EUS, ultra sound endoscopy. Not sure why and what is going to happen next. All of our minds are all over the place and I thought someone here maybe able to tell me if this sounds familiar. He sleeps most of the time, has no appetite, the jaundice is improving because of the stent but he still has no pain at all... anyone have any thoughts or is there anything we can do.

[rachelqt]

Hi jjsmith,

Sorry to read about your Dad. Im sure you are feeling all over the place. It is really hard not knowing and getting no answers. Unfortunately with PC it seems that with most cases it can take a while to detect due to the pancreas being so deep inside us. Again the symptoms of PC can also be confused to other illness such as pancreatitis or gall stones.

You should keep on consultants/doctors back and try and get things moving. As your Dad has no pain that can maybe be a good sign?, my Dad who has inoperable PC has never had pain so we try and take this as a positive.

I hope you get answers soon and hopefully your Dad gets a better outcome than PC.

Let us know how he gets on

Takecare Rachel x

[suef]

Dear jjsmith,

I wonder if your Dad perhaps has an IPMN, as I did. It was a tumour on my pancreas, I also had diarrhea and vomiting but very little pain. During the endoscopy a stent was inserted in my bile duct, just like your Dad, and that relieved the symptoms. The tumour proved to be non-cancerous, which was really good news, so try to think positive.

However do push the medical team to get the diagnosis through, don't let them delay. Be polite but VERY FIRM!

Good luck and do let us know what happens.

Very best wishes,

Sue

[jjsmith85]

Thank you for your replies. We will try to remain positive, it is just the waiting. Hopefully we will get some sort of diagnosis soon, as until then he goes on untreated and seems to be wasting away in front of our eyes. Roll on next week and lets hope it does not take too long for the results.

[jjsmith85]

Dad has had the endoscopy today and we have now been told it is very likely to be a cancerous mass at the moment is measures 3cm but is not attached to any blood vessels. They have taken a biopsy and will hopefully have results either this Friday or the following Friday. The two options that might be open to him are surgery as it is not attached to the blood vessels or chemo. He is 79 at present and I have heard the surgery is quite intensive, has anyone been through this? Is it is cure? Any thoughts help you might have would really help.

Thanks

Jane

[PCUK Nurse Jeni]

Hi Jane,

Sorry to hear about your dad's diagnosis.

The operation is a large one and is known as a Whipple's operation. There are a few people on here who have had it, so if you check out the following forum posts, you will see:

http://bit.ly/L2qoil

Also, check out some of the real life stories who have also had it: http://bit.ly/L2qw1f

Your dad will be thoroughly assessed by the surgical team before he has anything done, and he will have several fitness tests to make sure he can cope with it from heart and lung point of view and other tests of course. Has he been referred to a specialist centre yet? This is where the operation will be carried out. They may well see him to give him the results of the biopsy. Have you had a look at our Overview booklet? It can be downloaded here: http://www.pancreaticcancer.org.uk/media/110453/newly_diagnosed_pack_web.pdf

This might help you with any questions you might have for the team.

Hope all goes well.

Please email support@pancreaticcancer.org.uk if you need any further questions answering.

Kind regards,

Jeni.

[suef]

Dear Jane,

I had a Whipple op two years ago, aged 64. It is indeed a big operation but the surgeons have a lot of expertise now. There are several stories on this website, as Jeni has mentioned, and you will get a lot of information by reading them.

The only thing I would add is that a key success factor is the number of Whipple ops performed by surgeons each year, the more they do, the better they get. So it might be a good idea to ask about this at the hospital where you are sent. And remember to PUSH the medical team, unfortunately these days you often have to be VERY firm to get action.

Good luck and do let us know hos things go!

Very best wishes,

SueF

[jjsmith85]

Good news I hope....we have had confirmation that the biopsy has confirmed it is Pancreatic Cancer but is operable so back to Queens Medical on Thursday for an assessment to see if he is strong enough. Fingers crossed, I am guessing that we will be able to ask of all the questions then.

Thank you for your help so far we have taken all on board, read all of the stories over and over and have been firm with the doctors as the responses seem so slow, but we have chased and chased and at last we can see a light at the end of the tunnel, so thank you again.

Jane.

[suef]

Good luck Jane, and do keep pushing the medical staff. You will need a lot of support over the coming months, and we are here for you.

Very best wishes,

Sue

[jjsmith85]

Finally we have some good news after more tests and a PT scan the cancer has not spread so Dad will go into xx on Monday for the Whipple Procedure. He is very apprehensive but wants to go ahead and has today been helping with a new research based on the use of insulin in stomach ops. He has been so brave, keep fingers crossed for Monday x

[laura]

hi jane, so glad you have got some positive news for your dad, of course you are worried for him, i dont think they would offer an operation unless they thought he would get a good outcome.

do what your doing, support him and be there after the op, my best wishes to him and look forward to your next post.

chin up, stay positive, love laura xx

[suef]

Dear Jane,

I will be thinking of you and your dad on Monday, will keep my fingers crossed for you. There is life after a Whipple, I had one 2 years ago and have made a very good recovery.

It is VERY important to follow the instructions of the medical staff. For example, I was not allowed to eat or drink anything for 2 weeks - and I didn't, was fed intravenously. But the relatives of the lady in the room next to me brought in some grapes - and she ate them, and it caused terrible harm.

Also the operation can be very long, I was in the operating theatre for 8 hours, so don't be surprised.

Do let us know how it goes, we are here for you!

Very best wishes,

SueF

[jjsmith85]

Well the worst possible scenario after taking Dad to theatre this morning at 9am I get the call at 2pm saying the op was unsuccessful. The tumour was too deep to remove completely and the prognosis is terminal and just a matter of time. I am in complete shock I did not expect this to happen. Poor dad has been told and is so brave it breaks my heart. Not sure what is next. He has still had a major op so will be in hospital for about 10 days, the rest I don't know.

[laura]

dear jane, am sure,and can relate to it, the absolute shock you feel, bri, my hubby, had an unsuccessful whipple in aprl 2010, none removed as tumour wrapped round superiour mesenteric vein, so bypass or two done and sewn up! it seems so cruel when they tell you straight off that "its terminal" all our lives are terminal aren't they.

bri has done very very well with treatment of chemo and still here and enjoying life, wont give you the whole speil now, i know things might not be the same for you but try to keep your thoughts openminded its very early days for dad and he will need lots of reassurance and positiveity, best wishes and love laura xx

[jjsmith85]

Laura

Thank you so much, the utter despair I was feeling has lifted. From April 2011 is wonderful. I do realise that each case is very different but yesterday our hopes were smashed and your words have helped tremendously. Thank you

[laura]

hi jane dont know if it was a typing error but bris attempted whipple was 2010 not 2011!

you will find that dad will be much better when hes home, try and get a referral early on to mac nurse or a specialist nurse within oncology, you will find them so helpful as of course for questions etc our own jeni here? all the best and so glad i was able to be some help, anytime, love laura x