Reluctance

[farmers wife]

I have had severe pain left upper abdominal, spreading through to my back, every night for 14 months, taking 2 100mg Tramadol + 2 300mg Gabapentin before bed, these take the edge off the pain but mainly assist sleep. I have had 3 children 2 painful ectopic pregnancies and have never suffered pain like this.

Tests: Stomach Xray, Gynea scan, CT, MRI, MRCP, Barium & Bloods. All negative. Any suggestion that I have a pancreas problem is dismissed. 1 consultant says "I need to learn to live with the pain", another says "there is nothing wrong with her". GP is kind but also reluctant to accept possibility of anything wrong with pancreas.

Have searched the net for answers, repeatedly coming up with 'when everything else has been ruled out (and it has) then a diagnosis of a problem with the body or tail of the pancreas is made by exclusion.' I have learned that a problem of this type is rarely noticed early enough to provide a solution, that sometimes the only symptom is abdominal and back pain. Sadly, that it is normal not to be taken seriously.

I am more than anxious to remove the uncertainty of not knowing the cause of this pain. The NHS choices website states that any severe pain that does not go away is a serious problem and to immediately contact a GP.

I have turned to this forum in desperation, but when I read the heartbreaking stories I just break down in tears as I do not want my family to suffer in the way that so many of you have, especially if something could be done now to prevent any more torment. I would like the pain to go away and everynight after taking the pills I pray that the pain will disappear as quickly as it came and I will not need them again.

Please help me if you have any similar experience or guide me in the right direction for a solution to my problem. I am only 50 years young, it concerns me that too often people are fobbed off and told to come back in a month, in my opinion no person whatever age should have to learn to live with pain, especially if later it is found that the cause is something so wicked.

Thank you and good wishes to you all.

[louiepc]

Hello,

I think that you have put up with a lot of pain for a fair while now. There is obviously something wrong, and to just "put up with it" - is out of the question. Have you had an ERCP?

My mum had numerous tests, like yourself, before eventually, having an ERCP, it was then, and only then, that the doctors started looking more closely at the pancreas. It took nearly 2 years to get to this point of having this test.

You are right, no matter what your age - and at 50, you are still young, you should be able to get treatment for problems.

Is it possible to ask for a second opinion or referral to a different doctor/hospital, maybe one that is more uptodate with pancreatic symptoms?

Good luck.

louie xxx

[laura]

hi there, i would definately seek another opinion, this is your right, i dont know if you would be able to afford to pay for a private appointment? shoulnt be too expensive, we paid about £70.oo for a consultaion with a respiritory consultant, just to rule out other possibilities, we were then seen on the national health for tests scans etc, we just got things moving quicker, not that i really agree with having to do that, but need must.

drs and specialists sometimes put things down to stress and anxiety, when they dont have answers, perhaps you could ask your dr. "what would he do in your situation and with continual pain" ? would he just put up with it? what do your family think?

you could ring the helpline here and speak with jeni or anna! laura

[Nardobd]

Hi, depending on the age of the doctor I would pick a suitable family relative and ask them "If I were your [mother/wife/daughter/sister], would you still say that?". Invariably the doctor will outwardly say that they would still say the same thing but it might just make them think a little more about what they would do for that relative and you may just get someone who says "Yes, but perhaps I would also do this test/procedure" and then you can press for that.

Your GP should be your advocate...ask them to speak up for you and tell the hospital that it's not acceptable to leave you in unexplained pain.

If that doesn't work, then speak to your local PALS (Patient Advice and Liaison Service) team - they are usually attached to hospitals.

Explain that you are simply looking for an explanation for the pain at the moment. That pain is the body's way of alerting us to something wrong and you can't accept that you are in this considerable amount of pain for no reason at all.

If all else fails, a private appointment may be the only way you can get peace of mind, but we all pay into the NHS and I'm reluctant to recommend that someone pays for a private appointment unless absolutely necessary.

Most of all, don't make up your mind that you have a serious pancreatic disease - it could be something completely different. I certainly hope so, for your sake.

Let us know how you get on.

Nicki

[farmers wife]

Thank you, Nicky, Laura & Louie for taking the time to reply and for your good wishes.

I try and convince myself that it is probably a small cyst or something quite insignificant, but whatever it is, it is painful, needs looking at and dealing with before it becomes something that is beyond help.

With love and prayers to you all

Karen x

Edited July 17, 2012 by farmers wife

[suef]

Dear Karen,

I am so very sad to read your story. It is indeed true that many cases of pancreatic cancer are diagnosed too late, and, even if your pain is not caused by pancreatic cancer you are entitled to a careful examination and diagnosis.

Perhaps indeed it would be good to have a second opinion. I do urge you to contact the Support function of this website as they may be able to recommend doctors & clinics with the relevant experience.

Tel: 020 3535 7099

Email: support@pancreaticcancer.org.uk

Good luck, and do let us know how you get on.

Very best wishes,

SueF

[louiepc]

Hi Karen

Sorry to hear that you are suffering so much.

If your doctor is like the GP my mum has, then unless you repeatedly go back and in the badger them, they seem to do nothing. Insist on a second opinion, insist on seeing a consultant specialist, put it blatantly that this is your life and you need to know if there is anything serious going on.

It's all well and good keeping a diary of pain,food etc etc, but as time ticks by and nothing is being done its just infuriating. I know its probably expensive, but is there a possibility that you could go private, just for the inital tests?

Good luck.

louie x

[farmers wife]

Dear Friends, I hope you don't mind being thought of in this way, but I feel that your are.

I am much lifted by a letter that my GP has sent me today, this came in advance of a telephone appointment that I made for late morning. He has acknowledged that as everything else has been carefully looked at, scanned etc, that he is in full agreement that I do have a problem with my pancreas. My husband and I have been trying to convince them of this for more than 1 year.

He has written to a specialist at my nearest hospital, a large university teaching unit. Someone he believes is knowledgeable in this field and a copy of the this letter was sent to me. I have looked up the consultant and he is an upper GI specialist, as they do not treat pancreatic disease at this hospital. However, he will see me and advise of the next step. We are at last heading in the right direction.

Thank you all again for your kind advice and thoughts.

Wishing you all good wishes and prayers in your own battles.

Love, Karen x

Edited July 17, 2012 by farmers wife

[PCUK Nurse Jeni]

Excellent! This is great news.

Hope the consultation brings some further news for you.

Kind regards,

Jeni.

[nanny]

Hi Karen,

I have been reading your posts with interest and feel wholeheartedly sorry that you

don't seem to have got any satisfaction through your Doctor and have suffered all that pain. I do hope now that you

are having the tests now that you obviously need, and that the results are good.

My Husband too had an on going pain in his back, probably for a year but unlike you would

not go to see a Doctor. 6-8 months into this pain we got him to go, he told the Doctor that cancer was in his family and he feared it (mother, father and other close relatives) and so he was sent for an abdominal xray and blood was taken. The answer came back all clear 'No cancer' the Doctor announced, but the pain persisted and we disregarded it, safe in the knowledge that it wasn't cancer. Four months ago the pain had moved around to his side and enough was enough we asked for an ultrasound thinking this was gallbladder stones.

We were going to pay privately if the Doctor couldn't arrange it for us on NHS 'at what cost is your health'? An x ray appointment followed a week later and a CT scan also the same day obviously something was wrong. PC was diagnosed with secondary to his liver.

Please, please, push for xrays and if they wont do it and you can afford it have a CT scan it is so important to get diagnosed early.

I will pray for you that your news is good news and nothing too serious.

Keep us posted.

Nanny

[farmers wife]

Hi Nanny, thank you for your message, what a lovely surprise for me on this sunny morning, I really appreciate your encouragement. I am finding that many patients the world over have difficulty with diagnosis of pancreatic disease. The symptoms are known, yet only when all other illness or disease is ruled out do professionals find the pancreas problem, often too late.

I do hope that you and your husband are coping with this ugly cancer and that you are now receiving the best care that you both deserve, you are in my thoughts and I will pray for you.

With love & prayers for everyone, Karen

Edited July 17, 2012 by farmers wife

[farmers wife]

Hi everyone - thinking of you all everyday, always hoping for you.

I have an appointment this morning with a different Doctor.

My pain is increasing at a faster pace now. Up every night again, managed just 3 hours sleep tonight. A good time to send email messages to my children.

I continue to be frustrated that this has gone on so long. Into 17 months now.

Good wishes and love, Karen

Edited July 17, 2012 by farmers wife

[rachelqt]

Hi Karen,

Wishing you the very best of luck with your appointment and I will say a prayer that it is a positive outcome for you and you get the pain sorted! You have suffered far too long with this!

Keep us posted

Takecare Rachel x

[farmers wife]

Hello everyone, I think of you all each and every day.

At my last appointment (HPB Unit), lovely Doctor gave his view of IBS. He did point out something small on the distal tail of my pancreas, he thought was probably a cyst. I knew in my heart from the start of the consultation that, once again I was facing another brick wall.

I researched pancreatic cysts and have found that in the United States they take these rather serioulsy, cysts are monitored according to size, if they are symptomatic immediate action is taken as they can turn to cancer or be malignant already.

The scan seen at the appointment was a year old, this had not been noticed, it was assumed that it was recent. So I had another one done last Thursday evening. The Radiographer uploaded it immediately to the HPB Unit.

At the weekend I found an NHS newspaper article promoting early diagnosis of Cancer, the story was about a patient with Carcinoid Tumours of the stomach, these can grow anywhere in the body and are also know as Neuroendocrine Tumours, a type called MEN1 can be hereditory. In this case the condition was found accidentally following blood tests for another problem. During removal surgery it was realised that there were many more tumours that had not been seen on the scan. This patient is my cousin.

As a family we are now gathering and pooling information as we realise that every person (apart from 1 who died from a heart attack early 40's) has died from cancer. My Grandmother had cancer 4 times before it took her in the end. My Mother died from cancer aged 63.

Today, a few days on: The lovely Doctor (the nicest I have met so far) telephoned me, having just returned from his holiday, to say he has had 'a change of heart'. I think down to not having the correct information at my consulation.

I told him that my new scan was there waiting for him, whilst on the phone he loaded it to his computer (over 700 images) and said immediately that he could see calcification and a stone. We both agreed that the stone could easily be the cause of my pain.

The plan is to discuss my case at the MDT meeting and to look at the scan carefully, to see if the 'cyst' has increased or changed and talk about the stone etc. An appointment will be made to go back to the HPB Unit for further tests on my pancreas.

I had my gall bladder removed over 10 years ago, the stones in that organ caused the same pain as I have, same type, just in a different place. Nearly 18 months later it is far more severe. I mentioned this many times to all of the people I have seen, even asking if because I do not have a gall bladder, that it might be a stone growing in the pancreas. No, was the answer from all of them.

Although I have battled for a year and a half, the fight is not over. I am at last been taken seriously and treated with respect. Many people would not have researched the amount I have which has given me a knowledge of my own body that has made me persevere with well educated health professionals. I do not know how they treat stones in the pancreas, I will find out with more research when up in the early hours. The cyst: I will wait to be told if it has changed or grown.

Which of these two (neither should be there) is causing the extreme pain I have, we don't know yet. I have to say how relieved I am to know that I am not going mad, I did not imagine this pain, it is related to my pancreas and that there is something there, 2 things!

I feel that I am blessed. If the cyst turns out to be a Neuroendocrine problem, I am ultimately lucky to know about it now. I do have some symptoms related to this disease (diarrhoea and flushing), with the family history it will not be a surprise if it is this type of cell. We have seen it early enough to treat.

Thank you all for listening, I will continue my story under diagnosis, but not under the heading of Reluctance, this is no longer appropriate. I will continue in the hope that even the smallest detail will help someone else, not to give up when you know something is wrong, continue to ask questions, be a nuisance.

Love and good wishes to all

special thoughts & prayers for Nicola and Littlesister xx

Karen

[DRAD3]

Well done Karen!

You are an absolute inspiration to us all. I, for one, am definitely one of those people who would have been fobbed off and felt guilty for being a nuisance and wasting people's time. Not now - your story has proved how persistence and trusting your instincts can certainly pay off.

I really hope that this new positive momentum continues and that you are pain free and feeling better very soon.

Much love

Deb

x

[farmers wife]

Thank you Deb, I really appreciate your kind words.

It is the love, care and encouragment of all the loving people that leave messages on this forum that has kept me going, especially in the dark of night, when I am up and in dispair, wondering what to do next.

Love, Karen x

[rachelqt]

Hi Karen,

I am deligthed you are getting closer to your answer and it seems more positive that it can hopefully be treated!!

I agree with Deb that you are an inspitation as many of us would feel like a nuisance after the many knockbacks you have received by doctors.

I will keep you in my thoughts and prayers that you will get relief soon.

Keep us posted on your journey

Much Love..Rachel xx

[GunnarG]

I know just how u feel farmers wife. ive jumped to the same conclusion as you. cancer in the body or tail of pancreas. the doctors say there is nothing wrong on ct or mr.

and that i should try to relax.

they wont do anymore investigations.

My symtoms are: Loose pale stools ,(sometimes in big quantities and this symtom is also my most concern)

Weightloss 12 kgs. and i cant get them back on. ive tried for months!

some small almost unoticable pain in back.(feels like the back is tired.)

uppper stomach cramping like pain. (comes and goes ,also moves around in stomach location)

Loss of appetite and feeling generally very very unwell. no power left in me.

Seems like no matter what i eat i wont gain any weight from it.

i have started taking creon 25000 without the doctors advice. and the scary thing is that it helps calm down the stomach and make stools firmer and looking more normal.

i now cannot eat without taking this capsules. this is like a nightmare and i have put my life on hold for several months now. i really do not know what to do. as the doctors say that if i come back with pancreas talk anymore they wont see me.(my gp actually was on the verge of going the legal way of removing me as patient from his list.)

is this acceptable?

i am 28 years old live in norway have 2 sons and i feel abandoned.

my family dont even believe me. leaving me no choice but to do this on my own, i just know i do not have much time figuring this out.

[PCUK Nurse Jeni]

Hi GunnarG,

Sorry to read about your story.

Please do email us at support@pancreaticcancer.org.uk, and we can try to help you hopefully.

Kind regards,

Support Team.

[DRAD3]

Please contact the support team. This sounds very frightening for you and I can understand that you must feel quite unsupported and alone. This is totally unacceptable and I do hope that someone can help you soon. Wishing you lots of luck and the strength to keep on trying to find an answer.

love

Deb

x

[susikus]

This sounds very scary for you GunnarG and it feels like you feel quite alone. You mention you live in Norway - I know nothing about the doctor system there - but you also mention the doctor doing the legal thing to get you removed. Is there an option to swap doctors anyway? It seems like you've had some investigations done - talking to the team at pcuk would be enormously useful I am sure - I hope you do - because talking to people who know what you're talking about is priceless.

And Karen, how are you getting on - it has been really quite a battle hasn't it? I'd love to hear if you're further forward

Best wishes to both of you

Sue

[GunnarG]

Hello again. i went to private doctor and im scheduled for a new mri on thursday.

i also forced my gp to send me to do an Eus. so im to get an appointment for that within 25 november.

dont know if this is a good procedure in body tail pc cancer .

the loose stools are now turned into somewhat firm but i no have fewer bowel movements and more pain after eating (on left side both stomach and back ,also a general upset stomach kinda pain throughout the day.. ive also stopped using creon for a while to se what happens.(maybe thats the reason for pain escalation?)

feeling generally not good but not bad ,just very apathic and depressed.(im used to depression cause of my tourettes adhd, but this is a different kind of depression ,as depression usally cause me to eat a lot and gain weight!)

however im know so sure what this is that if i could i would get my self operated.

[GunnarG]

it should be the doctor orderig this tests ,and finding out my next steps not me.

[GunnarG]

my lust on life is zero.

[GunnarG]

like i couldt get more freaked out now my poop suddenly goes kinda light grey/greenish :!!