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New Diagnosis Limbo

Postby LanasMum » Mon Jan 23, 2017 10:27 am

Hi all. Have been reading posts and learning a lot on behalf of my Dad who is newly diagnosed - have now come up with some questions, and I guess just a need to write it all down, so I thought I'd introduce myself and Dad's situation to this lovely supportive group.

On holiday in October (long haul), he developed what we now know is a DVT - was uncomfortable for the 6 weeks he was away. GP did a test for DVT early Nov - negative and treated him for a chest infection. Dad went back in December as still breathless, calf hot and swollen - ultrasound confirmed DVT in groin and small ones in lungs and something was seen in the lymph nodes so we were told he would get another scan (not sure what sort) after Christmas. Over the holiday period he started getting a bit of backache and lose his appetite, feeling quite bloated - we thought it was a side effect of the blood thinning tablets.

Following the scan, ten days ago, the GP phoned and told us he was almost certain it was pancreatic cancer but it hadn't spread. We had an anxious 5 day wait to be told by a consultant the tumour is inoperable and has spread to his spleen and slightly into the stomach. It has happened so, so quickly, to a supremely fit 74 year old I have never known to be ill and who was cycling 50 miles 3 - 4 times per week until October.

So many of the stories I have read on here have started with jaundice symptoms - I hadn't read any where a DVT was the first symptom ? Does this mean this is likely to be an unusual presentation of the cancer ?

We are now waiting for a biopsy to determine "if chemo would help" - we have been warned it is aggressive and I am mentally preparing for the worst news but hoping chemo will be an option. I know we have to move him from blood thinning tablets to injections, but even so, a wait from Wed 18th Jan to Feb 4th seems far too long, then he had another appointment come through to see the same consultant (not oncologist) on Feb 24th. My sister is contacting his assigned nurse today to ask questions and try to move things forward quicker - this waiting for the detailed diagnosis is not good for him or any of us.

In the mean time, his appetite has worsened - although he now has medication that I think is kicking in because he did eat a good meal yesterday for the first time in about a week. The back pain is worsening and keeps him awake at night - he has to keep changing position. At the moment it is managed (just) with co-codamol but we are going to have to ask for something stronger very soon. These escalating symptoms make me feel we just cannot sit back and wait another month or more for answers - surely this cannot be protocol for an aggressive cancer ?

He worries he is deteriorating every day and we are all just knocked for six by the speed of events. I am the one who needs to know facts - if chemo is an option, I want to know what questions to ask, how to prepare, how to manage and keep him as comfortable as possible whatever the outcome. On Saturday he seemed lost - couldn't eat, in a lot of discomfort and so, so sad and worried about leaving mum. He has launched himself into making arrangements and having goals to keep him busy is helping, but it was awful to have to leave to go home and back to work last night. I'm only 70 miles away, but I just want to be there all the time for him and make this go away.

Thanks for reading xx

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Re: New Diagnosis Limbo

Postby sandraW » Mon Jan 23, 2017 11:16 am

Hi Lanasmum, Welcome to the forum, the place where no one wants to be but where hopefully you will get lots of help and support.
It sounds as though your Dad's tumour is in the tail of the Pancreas, hence the spread to the spleen and stomach, and no jaundice, jaundice only occurs when the bile duct is constricted due to tumour spread.
MY husband Trevor's tumour was in the tail, he was lucky enough to get surgery though, even though it had spread to his spleen, they removed 2 thirds of his pancreas and his spleen in a 5 hour operation.
We have marvelous nurses on the site, so I suggest you give them a ring, they are amazing and while we can give you support they can help you with all these questions and how to go about getting the best treatment for your dad as soon as you can. You can contact them on 0808 801 0707. They are so friendly and approachable so please contact them.
Its dreadful that you have to wait for these appointments, it just adds to all your worries, and being quite a distance from him must be hard too. Please let us know how your dad is doing, and take care love sandrax xx

Proud Wife
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Re: New Diagnosis Limbo

Postby Proud Wife » Mon Jan 23, 2017 12:18 pm

Hello Lanasmum and welcome.

So sorry to hear of your dad's diagnosis. It's quite shocking to receive that type of diagnosis and to see such a rapid decline in health.

In answer to your question about DVT, I know someone personally (not through this forum) who's first symptoms were exactly the same - a DVT and then a PC diagnosis. I am by no means an expert - just the opposite but I wouldn't necessarily read that as an unusual presentation, especially as your Dad now has several typical symptoms, i.e. backache, lack of appetite etc.

I do agree about the waiting times though, especially as you say he is deteriorating every day. Chemo is very much an option so please don't lose faith but...your Dad needs to be fit enough to cope with chemo so the sooner he's seen the better.

I do hope this helps, please come back on here whenever you need to and ask away, there will always be someone who can answer your questions or provide support xx


Re: New Diagnosis Limbo

Postby Marmalade » Mon Jan 23, 2017 1:07 pm

Hello Lanasmum,

I am so sorry you find yourself on this forum but hope you will find some comfort or release being able to chat with people who completely understand your issues. Absolutely would agree re speaking to the nurses! They are the perfect people to advise because they have a very detailed knowledge of this particular condition and all its presentations and treatment options.

You might want to consider that the DVT has nothing to do with your Dad's cancer but became the reason it was spotted when they were scanning for other possible clots and found a cancer. It is almost impossible to detect until it has developed to a stage where it is inoperable, very occasionally it is picked up when looking for something else as might be the case with your Dad.

We can all empathise with the frustration in waiting for scans and biopsies, we have all railed against it. People are trying to change it, there is a special parliamentary group currently reviewing evidence provided by people like us with a view to improving the diagnostic protocols. This will be of no comfort to you or your Dad of course, to you it is hell but it does work. If chemo is offered it may be to try and shrink the tumour to make it operable or to help with pain or to give Dad a longer life expectancy. It will depend on his other health issues and his general condition so try an keep him moving and eating but don't force it because it can be very uncomfortable for them to eat.

I hope your Dad has been given Creon, an enzyme to help digest his food. This should help with his discomfort when eating but again speak to the nurses about how much to take as doctors notoriously under prescribe. You need more with fatty foods and to take some extra in the middle if it's a long meal.

It may be that as things progress your Dad will be taken off some of his blood thinning medication as you are now dealing with something more urgent and compelling. The medics will be making judgements and treating the most serious/life threatening thing as the priority and the medications for each are not necessarily compatible. My husband was taken off his warfarin and given ibuprofen and other NSAI's instead as it helps with clots but also has a good pain killer which can be taken with paracetamol (they work in different ways) to relieve pain. We also found that a hot water bottle wrapped in a towel or wheat bag helped greatly with wind, discomfort and with back pain. Very hot unwrapped bottles or wheat bags should not be used. You will find his medication needs very frequent revision and I would ensure that your GP is up to speed because you will need help with pain control if chemo is either not an option or is not chosen (see my thread Our Journey without Chemo). Making sure you have adequate supplies of drugs for weekends and out of hours is very important, so a good relationship with the GP (who is ultimately responsible your Dad's care, outsourcing specialist care to hospitals and hospices) is key.

I always suggest a couple of other things, 1. Get in touch with Macmillan Financial to claim your Dad's attendance allowance. the hospital or GP should give you form DS1500 which means your Dad gets the full allowance from date of diagnosis. You may not need it now but he is entitled and it will help later when you may need carers. Macmillan do everything for you by phone so it's very easy. The other thing is ask your GP to refer you to your local palliative care team, this may be a local hospice. I know that sounds too soon but they do more than end of life care, they run fabulous courses which help both carers and patients understand what is happening to them, how to deal with pain physical and emotional, where to get help. They provide day centres and coffee groups for people to have a bit of time away from their carers but where they can get support etc and someone trained to deal with their fears. They have really useful downloadable information and they can access equipment for later on if it is needed too. They are about quality of life and give families so much more confidence in helping the patient than they would otherwise have, even if it's just coping with chemo side effects.

I hope you get some answers to your questions very soon but don't ever worry about posting here about anything and remember the nurses are just a call away. Best wishes,

Marmalade x
Last edited by Marmalade on Tue Jan 24, 2017 10:16 pm, edited 1 time in total.

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Re: New Diagnosis Limbo

Postby Elaine123 » Mon Jan 23, 2017 1:08 pm

Hi Lanasmum....your Dads story kind of mirrors my husband Pete's on holiday end of Oct came back feeling vaguely unwell GP thought it was an ulcer but then took jaundice that week and diagnosed soon after. They discovered a DVT at his lungs soon after. You will get excellent support on the forum and a combined wealth of knowledge . I hope your Dad stabilises soon and chemo can commence.....stay strong

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Re: New Diagnosis Limbo

Postby Veema » Mon Jan 23, 2017 4:06 pm

So sorry to hear of your Dad's diagnosis...it's a truly awful disease with rotten statistics unfortunately. I agree with all the comments above...I'd be on the phone and badgering someone daily to try to get an earlier appointment...time really is of the essence with pancreatic cancer.

One thing regarding the creon Marmalade mentioned...it does depend on where the tumour is as if it us in the tail, which is what it sounds like, that part is responsible for insulin production...if it's fairly clear of the head of the pancreas (which is the bit that produces digestive enzymes), he might not need it, but it's definitely worth asking about, especially as you don't say where in the pancreas the tumour is. If he does need creon, then he should also have omeprazole or similar to help with its absorption.

If he's struggling to eat, get the GP to prescribe some supplements...he'll need to keep himself built up in he's to have chemo.

I do hope you can get an earlier appointment.


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Re: New Diagnosis Limbo

Postby Didge » Tue Jan 24, 2017 12:19 am

Hello Lanasmum. I agree with one of the posts here that the DVT is probably nothing to do with the cancer except that pancreatic cancer can lead to clots so it could have been a combined effect with the long haul flight. As,Sandra has said it sounds as if the tumour is in the tail and that does not tend to cause jaundice. My partner had his spleen and a third of his,stomach removed. I assume the consultant who said it was inoperable was a specialist surgeon from one of the designated hospitals for pancreatic cancer? If not you could ask for a second opinion. I don't want to give you false hope as it may have spread too far but it might be something you would consider. It's such an awful time for you all, I remember those first days of shock like they were yesterday. Do let us know how things go x

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Re: New Diagnosis Limbo

Postby LanasMum » Tue Jan 24, 2017 9:08 am

Thank you so much everyone for your really helpful replies. I've been reading some of your stories and taking notes on any hints and tips to pass to my mum - in awe of your strength and so grateful that you take the time out to support others xx

I have no more news - just trying to hold it together as I think the emotion is hitting me now after being with Dad all weekend but will keep you updated - it really helps to write it down and know it is read by people who understand xxx

PCUK Nurse Jeni
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Re: New Diagnosis Limbo

Postby PCUK Nurse Jeni » Tue Jan 24, 2017 4:50 pm

Hello Lanas mum,

I am sorry that you have found yourself here on this forum, as Sandra says, where no one wants to be, and I am sorry to hear about your dad's recent diagnosis of pancreatic cancer.

It is not surprising that this has come as such a shock with your dad being such a fit man until so recently.

I note that you have already had some wonderful support and tips from the forum members, and there is a wealth of experience on here from all different parts of the pancreatic cancer journey.

Just a brief comment on a couple of your points - regarding Deep Vein Thrombosis, or Venous Thrombolytic Events (VTE) as they are known as (as in clots in general, not specific to the deep veins) - definitely these are a recognised symptom of an underlying malignancy - studies have shown approximately 20-30% of first incidences of VTE can be associated with an underlying cancer. Certainly, we are aware of several patients who presented with VTE as the only sign of anything being wrong, and are often scanned, and a malignancy discovered. Also aware of many pancreatic cancer patients who either had a first symptom of VTE, or were diagnosed with VTE at some stage throughout the pancreatic cancer journey. So, although not the most common way of presenting, certainly still a warning sign - however, with your dad, he had the added risk from the long haul travel, so difficult to exclude this as a cause.

Blood thinning tablets - may I ask if this was Warfarin? If so, warfarin is very well known for interacting with many other drugs, and most especially, with chemotherapy. This is a main reason why he would be switched onto the daily injections - these stabilise things much easier, and also, there is no requirement to have the INR blood tests which need to happen with warfarin.

It is good to hear that your sister is contacting the assigned nurse, and great that you have a contact who you can go to at this stage - I think it is appropriate to ask about whether things can be moved forward - most especially, the appointment for the biopsy.

Pain control is very important for quality of life - and if the co-codamol is not working, then ask for a palliative care referral to bring his pain under control - Marmalade has mentioned this, and it is important to stress that this service can be utilised right from the beginning of the journey for good symptom control.

Pancreatic enzymes are also very important - also mentioned by others on here.

Please do not hesitate to contact us should you wish.

Kind regards,

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: support@pancreaticcancer.org.uk
support line: 0808 801 0707

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Re: New Diagnosis Limbo

Postby Quickasyoucan » Tue Jan 24, 2017 10:00 pm

Just to echo what jeni said my dad who was diagnosed Stage 4 September last actually had a large DVT in 2014. To give the hospital their due they did ultrasound his stomach area at the time but the pc was not detectable at this stage. This obviously adds to the argument for new methods of early detection. There is a study being undertaken in oz of people with a family history being scanned and many are showing pancreatic changes. I will try And find article. All the best to all on our journey

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Re: New Diagnosis Limbo

Postby LanasMum » Wed Jan 25, 2017 5:25 pm

Thankyou again everyone.

We have not managed to move his biopsy date forward but his assigned nurse says that the MDT meeting will be 3 working days later, so hopefully we will have results and an action plan within two weeks. Apparently the end of Feb appointment is just a routine monthly appointment with the consultant. Things seem brighter today - back pain is under control still with co-codamol- better than last week even - and he is eating well again, thanks to a prescription for Esomeprazole.

Jeni - he was not on Warfarin tablets but something that sounds a bit like Ropexikov - not sure of spelling ? He has been moved onto injections and was told this is because he would have to stop the tablets 4 days before the biopsy but he only needs to stop the injection of Fragmin for 24 hours beforehand.

We are asking about Creon tomorrow

Mum and I are having a "case conference" on Sunday to discuss supplements etc. She is a retired pharmacist, so knows a lot. I've already mentioned bicarbonate of soda and want to get bitter melon capsules - is there a better brand / place to buy them ??

Thank you to everyone for your kind words and advice for someone just stepping on the rollercoaster xx

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Re: New Diagnosis Limbo

Postby Dandygal76 » Thu Jan 26, 2017 10:13 am

There are quite a few bitter melon capsules and you can make your own as well. It really is one of the worse things I have ever tasted but you can just get powder as well. I find if you look for it on amazon where there are lots a reviews and you will find in the reviews lots of debates over which supplement is best and why. The debates seem well informed but they are obviously not specialists.

I am glad he is feeling better and that the pain is under control. If the symptoms are managed life is so much smoother and not so desperate. x

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Re: New Diagnosis Limbo

Postby LanasMum » Fri Jan 27, 2017 8:48 am

Thank you Dandygal. After a good couple of days, I got an early morning call from my mum as Dad had a really bad night with back and chest pain. She is calling the GP now to ask for stronger painkillers. Realisation has hit again, with the copy of the letter that the hospital sends to the GP. She read it out to me - T4N1M1 tumour in the Tail involving the stomach, hylem (?) and spleen. It has made it more real for my parents, so a low day and has reignited the worry about just how much time he has. Sadly he can't even make the most of this time, as the blood clot in his leg has made it hugely swollen, hot and sore so he can't exercise - best he can manage is a slow ten minute walk.

Mum now has the number for this support line and said she will call this morning, and I found a contact for Macmillan nurses based at our local hospital so she is going to see them today too. I will go down again tomorrow.

I never liked rollercoasters before - now I loathe them.

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Re: New Diagnosis Limbo

Postby sandraW » Sun Jan 29, 2017 11:11 am

Hi Lanasmum,
I do hope your Dad is doing better now, and that the Macmillan nurses have arranged a visit, we found our nurse really lovely and even though we didn't actually need her she was always there in the background if we did.
When you see it written down on paper it certainly brings it all home, I remember reading Trevor's discarge papers, and feeling exactly the same as your Mum does.
I do hope they can manage your Dad's dvt as he is so uncomfortable, take care and keep us posted love sandrax xx


Re: New Diagnosis Limbo

Postby Marmalade » Sun Jan 29, 2017 8:17 pm

I think people have found their nurses a bit variable but you can always contact your nearest hospice. I found that they were a terrific help with carers courses, financial planning, practical help and a listening ear for the patient. You don't need to be in extremis to benefit, they are great at advice for chemo side effects too! M xx