My Dad just diagnosed 3 days ago

rwood · New User Joined: 11 Oct 2005 Posts: 3 Location: UK

Hi,

My Dad (Age 71) has just been diagnosed last Saturday with a tumour on his pancreas and also his liver. I don't know much more as I'm getting this from my Mum and Dad.

He had some pains in his legs in July which went away and then returned in the last month. He finally was admitted to hospital over a week ago with a DVT which was treated with Warfarin. He had further tests which showed he was v. slightly anaemic. After a CT Scan, the tumours were apparent and my mum called my sister and I on Saturday morning. It's said to be inoperable.

Obviously we're absolutely devastated. I spoke to my Dad today and they've given him an appointment at a clinic on the 27th October, but it appears they've said it's upto him whether he has Chemo or not ! This is what I've understood, which may not be absolutely accurate.

But I don't know what to do, it feels like they've already given up on him. Our world is upside down, I walked around in a daze over the weekend not being able to comprehend it.

We really need some help in knowing what questions to ask, particularly about treatment pros & cons. We have the NHS here in the UK (National Health Service) and I'm worried that economics could come into it. It is difficult to think rationally at times, but I'm scared my Dad will just accept things rather than ask questions - unfortunately he's a product of that English (Blitz) mentality of making do and not complaining.

My mother and father live 4 hours from my sister and I, so I am driving up to see them on Sunday for the first time since the diagnosis (which seems long ago now even though it's just 3 days).

My sister and I have been lucky with not having to face too much tradgedy in our lives and as a result it seems all the harder to take.

I know I will have to be strong for the other members of my family.

Any words of advice would be comforting right now

Richard

amo · New User Joined: 13 Oct 2005 Posts: 2

Hi Richard,
I am very sorry to hear about your father...

I am also like yourself in the same position, my mother went in for a routine gallstone operation on the 5th September and my wife and me went to visit her that evening and the doctor pulled us aside and told us that he had found lesions on the liver and they would conduct further tests.

Needless to say i pursued the doctor for test results which consisted of CA19 tumour marker, Biopsy and CT Scan.
They asked me to come and meet with them on the 8th September....I was preparing myself for the worst on the journey that day...

The doctor explained to me that the Biopsy confirmed that it Adeno-Carcinoma and the CA19 tumour marker test was at about 87,000 (normal range is 0-32) and the CT scan confirmed that the primary site of the cancer was the Pancreas that had now spread to the liver.
My family is completely devastated and we have been subject to watching my mum who is 68 detioriate over the last 6-8 weeks.

I am also from the UK(Surrey) and I would like to share what I have experienced from a NHS perspective.

1. My mum has started Chemo (Gemacitabine) although this will not prolong her life, it is hoped it will assist in pain relief, she has had 2 sessions and we are going for our 3rd tomorrow morning at Guildford Hospital.We are still waiting to see the net benefit as Chemo is very taxing on an individual.
2. If the doctor has said nothing can be done, please engage a second opnion.
3. Speak to your Dad's GP and see if you can engage a service called the Macmillan nurses who specialise in pallative care.
4. Speak to an Ornocologist, who is the cancer specialist to seek his advice and determine the extent of the cancer and treatment options.
5. The NHS aslo offer care services etc, this can be done via the district nurse and GP.

My thoughts are with you.It really breaks my heart when I see my Mum in pain and knowing that there is nothing i can do about it apart from making her last months comfortable and have all the family around her to comfort her.

Please feel free to contact me.

Amo

rwood · New User Joined: 11 Oct 2005 Posts: 3 Location: UK

Hi Amo,

Thanks for your response, sorry to hear about your mother. I've learnt a fair amount since my last post. I stayed with my parents last week to help out as my Mum was having a minor back operation.

The main problem for my father is the damage due to the DVT he suffered. His legs give him alot of pain and he can't walk or stand for more than 30 seconds or so.

He started Chemo today (also Gemcitabine) and also had a blood transfusion as he has been anaemic and it's supposed to help. He has been tired alot but we're hoping the transfusion will give him more energy and enable him to be more mobile. He was at the hospital all day and also there was some trouble with the transport to the hospital when the driver turned up early and apparently said he couldn't hang around; just incredible some people really!

He's under Professor Seymour at Cookridge Hospital (Leeds) and I was with him when we saw a registrar last Tuesday. He mentioned that there was a clinical trial they were running which sounded promising, but it means he would have to have a biopsy. He hasn't been able to have a biopsy because it would mean stopping his Warfarin treatment for maybe a month. My Dad decided not to do the trial because of this.

Afterwards I was uncomfortable about my father having to make a decision about this there and then. The advice given was that the chemo could possibly stem the growth of the cancer, but wouldn't cure it.

It seems very much a day to day existance, you're hoping that quality of life will be maintained/improved but at the same time dreading deterioration.

Thoughts of planning outings/holidays have to be offset against how he's feeling.

I have a friend in Australia who is recommending nutritional products which may help (I'm keeping an open mind about any forms of treatment). Unfortunately, it'll be difficult for my Dad as the product contains Vitamin K which I think counteracts the effects of his Warfarin treatment.

My parents are expecting a Macmillan nurse soon, so I'm sure that will be good particularly for my mum.

Good luck with your mum. BTW, although my parents live in the north, I live in Godalming, so if you ever want to meet up....

Best regards

Richard

amo · New User Joined: 13 Oct 2005 Posts: 2

Hi Richard,
I am glad your father has started the Gemacitabine. I think it does help from a pain management perspective imho.
My mum has just finished the 3rd course and we are waiting to see if she is fit enough to go for the fourth course...
It really is a day to day existence, my brother has left his post in Australia to care for my mum.
He has to be with her most of the day to make sure she is taking her Oramorph, Diabetec pills, etc and is constantly massaging her...
My mum seems to be going through differing pain levels during the day, therfore we have decided to move off the Transtec patches and onto Fentanal patches which are deemed to be stronger. I am hoping this will help with pain as I cannot bear to watch the pain flare up.
It really is a trade off against pain vs zonking her out. My family have decided it is better to have her zonked out than in pain, which i tend to agree with.
I am more than happy to meet up with you seeing as you are down south.
Please contact me at aphagora@hotmail.com to arrange a meet, I am sure we have got loads to discuss.
Best Regards to you and your family in this very difficult time.
Amo

rwood · New User Joined: 11 Oct 2005 Posts: 3 Location: UK

Hi Amo,

Thanks for your last post, my father is in hospital again overnight as he went in today for his 2nd chemo session and was found to be very anaemic. They're going to give him more blood. My Mum was worried about him as he's really had no energy and hasn't been eating well at all. He had changed from Warfarin to Tinzaparin (Heparin) to control blood clotting but I think this also has contributed towards the anaemia.

As you say, it's very much day by day, it's difficult to know what to do, but you do what you can. Quality of life is everything and if we can get little victories by finding sources of food/drink that he can eat, then it helps all of us. I have a friend in Australia who is an agent for USANA Essentials and associated products which may also be of some help. It approaches things from a nutritional stand point.

We'll see if the Doctors are ok with alternatives and see what happens.

I've also emailed you about meeting.

All the very best wishes for your mother and the rest of your family

Richard

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