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Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

How long to get definite diagnosis

Postby Bowie » Wed May 07, 2014 10:17 pm

Hello, my beautiful husband was diagnosed on 27th March with likely pancreatic cancer stage iv. He hadn't been ill, just lost a stone since Christmas and some intermittent diarrhoea. GP wasn't convinced anything much was wrong so he paid for tests himself, colonoscopy and finally CT scan. He then had to wait to see a consultant, then biopsy and as that was inconclusive waiting for second biopsy of metastases, but how long does this all take. I'm ringing the hospitals everyday, but apparently there are a lot of other people waiting and if he chooses to go private the Macmillian nurse has said he will be taken out of the NHS and will have to pay for all and any future cancer treatments. The hospital has now said he needs blood tests and MRSA before they can do a further biopsy and we have to arrange through the GP so another delay. Getting very worried and very scared in case it's getting worse, what are others experiences and is there anything we can do to expedite this?

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

Re: How long to get definite diagnosis

Postby sandraW » Wed May 07, 2014 11:16 pm

Hi Bowie, welcome to the forum no-one wants to join. It seems that the biopsies often come back negative from what I have read on the forum. Our case was different, my husband had pains in his lower back, he too lost a stone and a half in about 5 months, finally he was sent for an ultrasound where they found a cyst! on his pancreas, he was called into the GP surgery the following day, but we then waited 13 weeks to see an endoscopy specialist, and a further 3 weeks before a C T scan, but then things sped up and within 3 weeks he had surgery. I blame myself for not pushing for an earlier appointment to see a consultant but the GP said it was nothing to worry about and so even though I visited this site, I wanted to believe her. Just keep pushing, that's all the advice I can give,
and keep posting everyone here is very supportive. I hope you get some news soon take care sandrax

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Thu May 08, 2014 8:24 am

Hi Bowie,
My dad was visiting the GP constantly, with 2.5 stone weight loss, lower back pain and severe diarrhoea. His GP told him there was nothing wrong with him! My dad admitted himself to hospital where they found a large dark shadow over his stomach area. He had a CT scan a few days later, and we got the results of that a week later. He has stage 4 pancreatic cancer, which has spread to his liver. Chemo started 4 week later. My advice is the same as Sandra's. Keep pushing. Do not wait for them to contact you. Ring them and ring them.
I make all my dads calls. He has no idea how hard it has been to get him certain appointment. I have had to cry and phone and literally beg for him to be seen. They just don't see the importance sometimes. With pancreatic cancer, time can't be wasted waiting for a appointment.

xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: How long to get definite diagnosis

Postby Slewis7313 » Thu May 08, 2014 8:32 am

Hi Bowie and welcome to the forum. As Sandra stated, no one really wants to be here but it is such a fantastic and comforting source of support regardless of where you are on the Pancreatic Cancer journey.
I was diagnosed 18 months ago and only had one biopsy at the start which showed no trace of malignant disease, but this is indeed not unusual with this illness. The Multi Disciplinary Team at the time agreed that all factors / symptoms taken together strongly indicated that this was fully blown cancer and was treated as such. My response to chemotherapy confirmed their diagnosis as correct. It does seem strange that your Husband has been diagnosed and you have not yet been referred to an Oncologist to discuss possible treatments. My Oncologist appointment was actually scheduled before the biposy was undertaken, so your Specialists do on the face of it seem to be dragging their heels and need to be pushed for a treatment plan.

As far as the private issue goes, I had private surgery in Germany last year which was unfortunately unsuccesfull, but both my Oncologist and Surgeon here in the UK made it very clear that I would receive full ongoing NHS support with my illness in the future, regardless of any non-NHS treatment I opt to have. I honestly do not believe the NHS would/could refuse treatment. Might be a good question for the support nurses (Jeni and Di). Please give them a call as they are extremely knowledgable and helpful.

Good luck

Steve
X

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Thu May 08, 2014 9:20 am

Thanks everyone for your comments and the confidence to keep pushing. It does feel quite daunting to be fighting the system, when I naively thought that a cancer diagnosis would mean that everything was speeded up. I have been constantly researching the internet and hoping that it maybe autoimmune pancreatitis, but the consultant thought unlikely, because of the spread. However the CA 19.9 blood tests were normal, but apparently this can happen.

It's 6 weeks this week since the CT scan results and over 2 weeks since the endoscopy with biopsy. Even getting the result was a struggle. It was promised to be ready for MDT meeting that Friday, but the report wasn't completed. I rang every day and was told the process was to make an appointment with an oncologist only when diagnosis confirmed, at the moment it is 'highly suspected'. Finally after ringing constantly a consultant rang back to say inconclusive and nothing can be done until further biopsy and as pancreas biopsy often difficult will biopsy lung. That was Friday, then on Monday the nurse rang to say we need blood test and MRSA before the hospital can proceed. Got the blood test yesterday and asked for results to be sent to hospital. Will now start ringing the hospital.

It is all so scary as we don't have a medical professional to talk with and have no idea what will happen. The internet survival results are horrifying and without this site we would have no hope and be even more depressed.

Thanks Steve for the info on your private treatment, we were holding out hope after reading here, of possible nanoknife, but could not risk having to pay for all his care and this.

Anyway as you say this is the last place anyone wants to be, but thanks for giving information, support and making us feel we are no completely alone.

Fiona X

janem
Posts: 29
Joined: Fri Nov 01, 2013 10:45 pm

Re: How long to get definite diagnosis

Postby janem » Thu May 08, 2014 8:27 pm

My dad had digestion problems from June beginning of October be was told it was ulcers and given antibiotics. He then developed jaundice and was admitted on 21 October and told probably gallstones had a CT scan on 24 Oct and it was probably cancer on 28 Oct. He had an ultrasonic endoscopy and biopsy 25 Nov then we were told that it was cancer on 3 Dec and he was given his options. Remember this is only one person and each case is different but hopefully this gives you some idea. We live in the south east if this helps.
Last edited by janem on Fri May 09, 2014 7:17 pm, edited 1 time in total.

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: How long to get definite diagnosis

Postby MSH » Thu May 08, 2014 8:30 pm

Sorry to hear of your news Fiona, you must be feeling a bit shell shocked at the moment, and it isn't helped when things aren't co-ordinated.

You're right the survival statistics for pancreatic cancer are dreadful, but that doesn't mean they are hopeless. In order to improve the stats there is a national of units (hepatobiliarypancreatic or HBP)to facilitate diagnosis and treatment. Everyone referred to such a unit should have a liaison nurse to provide a point of reference and help with the various tests.

The MacMillan nurse was wrong to say there is a choice between NHS treatment and private, and many of us here can illustrate the error of her statement. I have interwoven NHS and private care and by and large the NHS has been extremely supportive.

Unfortunately it is not unusual not to get a definitive diagnosis. Like Steve, I was treated on symptoms and scan results after three biopsies proved indeterminate.

Treatment with the Nanoknife might be an option later on, but if this is metastatic disease the priority must be to start chemotherapy as soon as possible.

I hope you get some answers soon.

Mark

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Sun May 11, 2014 10:06 am

Thanks really helpful. Especially about the liaison nurse I asked and it is the Macmillan nurse, but the difficulties have been because we have been referred to a hospital outside where she normally work, hence she said it was best to chase ourselves. Have now got an appointment for the second biopsy next week with a result going to the MDT the week afterwards. I asked if treatment could start, even if still inconclusive and it will depend on the MDT's judgement, but based on advice here I will continue to badger.

Really helpful to clarify about being able to buy in private treatment and remain in the NHS, thank you. Even though I know he needs to get started on treatment first, it goes give some hope fir the future.

On a related note, His diarrhoea seems to be getting worse, he is upping the Creon, but still seems to get episodes most days. He is having a few glasses of wine with dinner and occasionally a beer or two at the local. In other people experience should he try to avoid alcohol? In all other respects he is well, despite retiring about 5 years ago he has now taken on some part-time consultancy work and although he's not done any manual work for several years is now throwing himself into DIY, including laying foundations for an extension. I am trying to get him to rest, but he seems to be in over drive.

Any advice around diet and work would be really helpful.

Fiona x

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Sun May 11, 2014 10:24 am

Does your husband take Loperamide and Codeine with the creon? Also, what size creon is he taking?

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: How long to get definite diagnosis

Postby Slewis7313 » Sun May 11, 2014 11:02 am

Hi again Fiona.......diarrhoea is a major part of my daily life since surgery back in October. I do also like the odd pint and generally struggle to cope with the relatively fast intake of liquid (beer) which does cause very watery emissions. I have tried wine, which I feel helps as it slows down the rate at which liquid is entering the system. However, after 2 glasses I am usually gasping for a beer so this option has limited effectiveness. If I eat a little while before drinking, it seems to help especially if the food includes bananas! My diarrhoea is due to nerve damage from surgery, so I am taking 5 Loperamide a day, 3 x 40,000 Creon with main meals along with a 25,000 with snacks/biscuits etc. Overall, mine is manageable but does vary from day-to-day for reasons which we have been unable to fathom.......there seems to be no obvious good or bad foods which I can directly attribute the more extreme bouts of diarrhoea!

Hope this is of some use. Chemo restarts tomorrow, so I will be testing the beer theory later today!

Steve
X

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: How long to get definite diagnosis

Postby Cathy » Sun May 11, 2014 11:39 am

Hi Fiona

Welcome to the forum. As you can see, it is a great place to come for support and advice. As has already been mentioned, the nurses here are great. You can email them on support@pancreaticcancer.org.uk

I am so sorry to hear about your husband being poorly, you've already begun a very steep learning curve. I wouldn't worry about him having the odd beer or wanting to throw himself into things. If he feels like it, why not.

It's helpful to keep a diary. I had a little hardback book that I took to all appointments, useful for noting side effects of treatment etc.

Re a liaison nurse. You ought to be given the name of a specialist nurse within your NHS trust area, not just a Macmillan nurse. It maybe that you haven't got one yet as they haven't given a definite diagnosis.

Steve... Very best of luck tomorrow for cycle 1.

Cathy xx

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: How long to get definite diagnosis

Postby Bowie » Sun May 11, 2014 8:38 pm

Thanks for replying so quickly. No he's just taking Creon, 25k and 10k, although after reading your previous helpful posts he has asked for 40k.

What does Loperamide help with? Is Codeine for pain, because at the moment he doesn't gave any, but would this help with diarrhoea? I'll definitely get him to try bananas Steve and I hope all goes really well for you tomorrow. I think a liaison nurse would be good, it' s hard at the moment to try and follow up appointments when we can never get through to anyone and we are both working now, although this obviously takes priority. Thanks for the notebook idea, we'll give that a go.

I know this is probably the same for everyone, but I'm really struggling with everything being about illness, from the moment I wake up until I go to sleep and then at various sleepless points. I am trying to carry on as normal and I don't want to make things worse for James by telling him how I'm feeling, but I just don't know what to do to make things better for him.

Fiona X

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

Re: How long to get definite diagnosis

Postby Didge » Sun May 11, 2014 8:55 pm

Hi Fiona. The carrying on as normal and struggling with everything being about illness is difficult. It's like being in a nightmare. But you are very new to it all, less then 2 months from diagnosis. You do have periods when you kind of get used to the situation so it's not necessarily the first thing you think of when you wake up. There are ups and downs, better news and not so good news, worries which come to nothing (you'd not believe how many of those there can be!) and all the time trying to 'carry on as normal'. It's an individual thing how to handle all this within a relationship which is why it's so good to be able to come on here and say how you are feeling. But I think it is also ok to say 'I'm struggling a bit at the moment' to your partner. Because there are times when you will need to be comforted by him and not the other way round! We can't make everything better for them, but by being there is a huge step along the way. At least I've been led to believe that!

Fifi

Re: How long to get definite diagnosis

Postby Fifi » Sun May 11, 2014 10:45 pm

Hi Fiona,

Loperamide is Imodium. It is supposed to stop the diarrhoea. Codeine also helps with this if he has extreme diarrhoea. It is also for pain, but can help with diarrhoea. My dad doesn't have pain at the moment and he takes both of these. Unfortunately they aren't enough for him, but his diarrhoea is unrelated to his cancer, or so we are being told. I would definitely ask for Loperamide. I know from seeing and speaking to my dad, just how much diarrhoea affects your wellbeing, mentally and physically. I know that getting this sorted, will make a huge impact on your husbands quality of life.

As for struggling day to day. I'm still working on that one. It consumes my entire life. From the moment I wake and till my eyes finally close, sometime in the night, my dad is constantly on my mind. I love him and want to help, but I can't. I struggle with going to work and having people complain that I'm not with it anymore. Of course I'm not.

Do you have support from family or friends? Proper support? I hope you do.

Good luck Fiona, we are all here with you, sadly.

xx

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

Re: How long to get definite diagnosis

Postby Didge » Mon May 12, 2014 9:40 am

I think it is sometimes worse when they are not with you all the time. I'm particularly suffering at the moment having not seen my darling for nearly a week. I also had a nightmare week at work last week and found it difficult to concentrate and got snapped at. This is definitely not a good period of time for me. But hopefully it will improve again. We all have to get through each day one at a time and I am trying, as we all must, to be glad that I'm here and he's still here and take what joy I can from that.