How long to get definite diagnosis

[Bowie]

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]

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

[Guest]

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]

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

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[Bowie]

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]

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.

Edited May 9, 2014 by janem

[MSH]

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]

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

[Guest]

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

[Slewis7313]

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

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[Cathy]

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]

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]

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!

[Guest]

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]

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.

[Bowie]

Hi Didge, yes I can understand how it is worse if you're not together and I completely understand re not being able to concentrate on other stuff. I had taken some time off work initially as I expected James would have loads of appointments, but as nothing much is happening am gradually going back and anyway he is so busy working and DIY-ing that I don't get to see him that much. I'm trying like you to be glad about each day, but I am struggling and finding it so hard not to look at stuff on the website and get depressed.

Fiona X

[Guest]

It is hard to not Google things. I'm still doing it and it breaks my heart to, but I feel I want to know everything.

It is good to go back to work. How are work with you? You will need time off for appointments, so I think it is best to be there now and they will try to be better with you when appointments come along.

x

[jay]

Just want to send a massive cyber hug Fiona. My husband was diagnosed 7 months ago and it still feels like im in a bad dream.

x

[Bowie]

Fiji, hi work is quite good. I have a degree of flexibility in that I can generally work the hours to suit providing I get the work done, so that's a blessing. I had initially thought about retiring I'm 58 and could take my pension early, but James is adamant that I should not be too hasty in case things turn out badly and I may need work for many more reasons than money and getting a new job after 55 etc.

Thanks Jay, I still can't believe this is happening, except for diarrhoea and weight loss he is well and looking great with a little sun tan after the bank holiday weather.

I'm trying to live in the present and enjoy normal day to day living, without too many plans, but feel totally inadequate when I realise how much better everyone else seems to be coping. I want to wake up and all of this to be over, but know it can't

[Didge]

I don't know about everyone else coping better! I'm not coping at all right now. There are times which are better and times which are worse and I expect that is the same for all of us. Don't expect too much of yourself. It is really hard to cope sometimes and that is understood. I can offer all sorts of advice like taking each day at a time and living for the moment, not looking ahead and just enjoy the moment. I can also tell you that it is often very hard to take my own advice! I'd like to think like that but often my mind just won't play ball.

[sandraW]

Hi Fiona, don't think we cope, we just pretend we do, we were told yesterday that Trevor's tumours have shrunk but because we never saw our consultant, we didn't find out by how much, so when I should be feeling cautiously optimistic, I am worrying that perhaps he should still be having treatment, are the tumours still growing, over and over round and round. Meanwhile Trevor is busy getting on with life and all our friends and family are over the moon with the news, I know exactly how you are feeling, but we justhave to be so thankful we still have our men so many lovely ladies on here have lost their's and yet they still post on here offering us their support. take care sandrax

[PCUK Nurse Jeni]

Bowie wrote:

> Thanks Jay, I still can't believe this is happening, except for diarrhoea

> and weight loss he is well and looking great with a little sun tan after

> the bank holiday weather.

Hi Bowie,

Is James on pancreatic enzyme replacements, such as creon? This might account for the diarrhoea and weight loss if he is not. If not, then feel free to drop us an email to support@pancreaticcancer.org.uk, and we can explain it to you.

Kind regards,

Jeni, Support Team.

[Didge]

Sandra, I know how you feel. My man was not able to have even half his chemo and even though he is officially cancer free for the moment, I am just waiting for it to come back instead of enjoying this time. I can't seem to get out of this frame of mind. I can't remember the exact quote but I remember Graham Greene saying something along the lines of "I can cope with despair but not hope". I think hope is sometimes a very hard emotion to deal with!

[Bowie]

Well finally James started treatment today, it has been 13 weeks to the day since his initial diagnosis. He had a PICC line fitted on Tuesday, all seemed OK and quite comfortable and then today chemo, which will be followed by another session tomorrow and then will continue twice a week for 3 weeks with a week off. Bad news is that he has lost even more weight, only 10 stone 10 from 12 stone when diarrhoea started in January. Still waiting for the report from his latest CT scan which was done a week ago last Monday, but the oncologist, althought not an expert, didn't think there had been much growth from the film, just a bit in the mets. Still no pain, which is a real blessing and diarrhoea more or less under control, thanks to Jeni's advice, but both anxious about what next.

At the moment he seems OK, even popped out to our local for a soda and lime too worried to have a real drink, but his hands started tingling holding the glass, I've now told him about others' experiences that I've picked up from this site. He managed to eat a light dinner, but I can't stop asking him if he's OK. We are both quite worried about passing chemo on, as well as avoiding alcohol and getting an infection after our introduction talk at the oncology unit, ie chemo will come out in any body fluids etc and could be transferred to others. We plan to use separate loos and James is really worried about the grandchildren, but I plan to hold him all night or a least until he pushes me away. He was also told today that he could be on chemo indefinely if it works, which was a bit of shock as we thought it was six months and then just watch and see. We have also been advised not to fly with a PICC, which as we had a holiday in Majorca booked next month, is a bit of a blow.

Anyway still feeling scared and know that this is life changing and not in a good way, but hoping the side affects aren't too bad and importantly that it works.

Fiona X

[Slewis7313]

Hi Fiona, good to see that the chemo has started. I too have a PICC line which is much more comfortable than normal IV, which with me last year was the dreaded 'find the vein' challenge. What regime is he on....Folfirinox, Gemcitabine, Capecitabine?

We are all aware of the toxicity of chemotherapy, but I have never been advised not to cuddle or hug people. I know it may be passed on through body fluids, but my understanding is that this only really applies to having sex, where a condom is advised. I had my 60th Birthday earlier this week and cuddled more people in one day than I can remember. We also only have one loo at home, which again we all use. My understanding may be flawed, but having to avoid intimacy (hugs) with family members and friends for me would be a big blow. Perhaps Jeni or Di could advise if precautions suggested to you both are possibly a little OTT.

I hope the chemo kicks in soon and that it will, in combination with the Creons, start to put the pounds back on.

Good luck to you both.

Steve

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