tell us your experiences of diagnsis of pancreatic cancer

[administrator]

Diagnosis of pancreatic cancer is difficult as symptoms may not occur until the tumour is quite large and the symptoms may be similar to many other benign digestive disorders. Not every patient gets the same symptoms as they depend on where in the pancreas the tumour first occurs or the type of tumour. Even when pancreatic cancer is suspected further tests may be required to ensure the symptoms aren't due to benign disorders such as panceatitis before decisions on appropriate treatment or surgery are made.

We would like to hear your experiences of diagnosis (whether a diagnosis was made quickly or took a long time) as this will help us to raise awareness of the problems facing our group of patients and may help to inform future studies, access to diagnostic tests or improved guidelines for suspicion of pancreatic cancer.


What type of pancreatic cancer do you have?

Which part of the pancreas is it in and had it already spread to other parts of the body when you were finally diagnosed? If it had spread where had it spread to?

What were the symptoms that first made you think that something was wrong with you?

How long did you wait before going to see your GP?

Did you make the decision to go yourself or did someone encourage you to go to the GP?

Was your first visit to the GP prompted by a change in the symptoms?

How long did it take to get an accurate diagnosis from the time you first saw the GP?

Were there any delays in getting diagnostic tests done? If yes which tests and how long was the delay?

Were you given one or more initial diagnoses (either by the GP or a specialist in a hospital or private consultation) that eventually turned out to be wrong? If so what were the 'false' diagnoses?

Were you given any reassurances that you didn't have a problem (either by the GP or a specialist in a hospital or private consultation)?

How did you come to get the correct diagnosis?

Had there been any change in the symptoms after your first visit to the GP that helped to get the correct diagnosis?

What diagnostic tests were done before you were finally diagnosed with pancreatic cancer?

Have you been offered any treatment or surgery? If yes what treatment have you been offered?


you can either write your experiences on this discussion board or send them to us by email or post.

[angelinamacc]

I am replying to your questions re diagnosis of Pancreatic Cancer with reference to my late mother.

She had Squamous cell cancer in the body and tail of pancreas.
It had not spread to anywhere on diagnosis.
She first complained of acute pain in the left side and raised temperature which caused her to be admitted to the medical ward for tests ( June 2005)
The tests showed a stone in the Gall bladder and as 6% of acute gall bladders present with pain on the right it was decided to remove her Gall Bladder in September.
A CT scan at that time showed no pancreatic tumour.
She did not recover and had a subsequent scan in feb 2006 which showed a 5 cm tumour in the pancreas.
She underwent a modified whipples in April 2006 and afterwards the doctors told her that the tumour was not a primary due to the nature of it. The doctors searched to locate the primary but never did.
She recovered well and was ok until october 2007 when she becanme ill, had a scan which showed metastatic disease in her rib and pancreatic bed.
She was admitted to hospital on 4th Nov and died on the 25th Nov.
We had a good couple of years after the surgery which we are grateful for so it was worth it, I just agree that it is so difficult to diagnose. Also I know a lot of patients live for years with metastatic bone disease so don't any one get disheartened reading this! Every one is different.
Hope this is helpful.
Angie

[Ellie]

Hi, I want to give you info on how my husband was diagnosed with his cancer. Hope it helps towards your reasearch.

Several times, at the beginning of his year, my husband kept coming home from work, saying he had flu. He would go to bed - hot, cold, burning up, feeling exhausted. He then started feeling utterly exhausted when he did anything. Digging the garden over took him 3 hours, instead of 1. You write these things off as coincidence, getting older (he is 57, so not that old!). He also came home one day feeling the same way, but also feeling sick, and went to the doctors, who said it was a stomach bug and to rest. Some weeks later, he suddenly got a rash from his waist, to the top of his legs. We put that down to a change of washing powder, but then it spread right down to his feet and looked different. That's when I sent him to the doctors again.

To our doctor's immense credit, she didn't palm him off with some cream and send him home. She was suspicious about the rash on his legs and immediately ordered blood tests. I think they suspected hepatitis and when I went online and read up about it, his symptons matched Hepatitis A. He had, by now, been feeling sickly a lot, had a pain in his abdomen sometimes and had noticed his urine was very dark. I think he had a 2nd blood test, for LFT, which showed raised liver enzymes. It was arranged for him to have an x-ray at the local hospital and that happened about 2 weeks later, due to a cancellation at the last minute. The same week, he had a scan and we were told there was an enlargement in one of his bile ducts, which could either be due to a stone, or a growth. That was obviously a big shock. It was a week later that he then went into hospital for the day to have an ERCP test. During the procedure, the doctor damaged his bowel and that night, our local hospital decided to send him to St James's hospital in Leeds, which I later learnt was a major cancer centre, with a brand new oncolgy wing which had just opened this year.

The next day, the surgeon in Leeds told my husband they would just repair his bowel and then see what happened. As he was doing keyhole surgery, our local hospital rang and said it was definitely cancer and so the surgeon performed a whipple's op there and then, taking 9 hours altogether. My husband woke up to find he had had major surgery for cancer of the head of his pancreas. We were old the cancer had been caught early, the operation had been very sucessful and he shouldnt need chemo. However, 2 weeks later, we heard that they had removed 23 lymph nodes during the op and 3 of them were also cancerous, so he would need chemo after all.

I believe we were so very lucky to have the diagnosis made so quickly and the tests and operation carried out quickly, too. I am so very sorry for those people who don't get to know until it is too late. My husband never had jaundice, which I believe is a sympton of this cancer. We did think he had lost some weight, but nothing major.

Our biggest problems have been in the last 4 weeks since he was discharged from Leeds. He has been in and out of both hospitals with constipation and a compacted bowel, which has caused him more agony than anything else. I have called ambulances, emergency doctors, taken him to A&E and I feel the aftercare has really let him down. Last week, he was rushed in again with severe abdominal pains and on Tuesday night, had an operation for a twisted bowel. 3ft of bowel was removed and the surgeon told him if it had been anymore, he would have been left with a very poor quality of life. My husband is still in hospital, on drips, oxygen, with a chest infection and very weak. I cannot believe that he could recover from a major cancer operation so well, only to have severe problems with something as simple as constipation. My biggest worry is that he is now missing his chemo. I just hope and pray he gets stronger and well again so that he can have his chemo and that the delay doesn't have a significant effect on his treatment.

To sum up - excellent care from doctor, early diagnosis & treatment at hospital. Very poor treatment afterwards for the side effects from the whipples.

Thank you for your work in helping to improve the diagnosis and treatment of this awful cancer.

Best wishes to all
Ellie

[molly1958]

hello. my late mother was diagnosed with pancreactic cancer in late march of 2008. She died on the 13th october. She started with the symptoms of having to go to the toilet urgently, ie" she couldnt or had great difficulty in controling her bowels. After a few weeks of this she visited the gp who made the assessment of ibs ( irritable bowel ) after a short while her stools became very pale and her urine got alot darker, so she was referred to a specialist who them said it was probably ibs she had the bowels examined at the hospital but they could find no obvious problem there. It was only when she woke up 1 morning and had to be taken to the docs straight away as she had gone orange! it was then that she had bloodtests, she actually had a call on the phone in the evening from the path lab telling her to go immediately to the doctors. following that she had a scan and that is when she was told that she had a tumour on the pancreas. the only treatment my mum had was a stent fitted as we were told she could not have an operation. the stent was put in place in march and lasted till august when she had to go back into hospital as it had blocked. We wernt told where the tumour was wether it was head or tail and altho my mum asked to see the scan etc it was declined. She was basically advised that chemo was not going to be effective so she didnt follow that course. I personally strongly believe that a quicker diagnosis would have been more of better help to my mum altho intially she was told it was located only in the pancreas ,it was the very long delay by the gp,s that to me was the disadvantage there. And in her last few weeks i found things dealing with health officials very difficult ,not alot of guidance or helpfulness.most of my mothers care was given by myself and my own research and prompting of the gp.s about drugs "ie" i mentioned to the gp about creon and he hadnt thought about it but prescribed it as obviously my mum was by then finding it hard to digest food. I thionk that alot of gp.s dont no enough about the intial symptoms of this dreadful disease and altho i accept the symptoms can be attributed to other conditions i feel that more research needs to be done

[rach]

My mum was diagnosed with pancreatic cancer at the end of may/june 2009. She had been feeling unwell since approximately xmas 2008 and had been to the doctors on various occasions during early 2009 with stomach complaints including acid reflux, alternating bowel habits etc. She had also lost approx 2 stone in weight since xmas until may.
On 6th April she went to Doctors who referred her for ultrasound for suspected gallstones. Mum had an ultrasound on 11/4/09 and the report suggested that she had a contracted gall bladder possibly containing stones. It was not possible to get a clear view of pancreas at this time.
29/4/09 - Mum up during night being violently sick and vomiting all night. Went to doctors following day for tablets to ease nausea.
1/5/09 - Mum started showing signs of jaundice and went to GP for blood tests. Also brought forward hospital referral which was due in june.
8/5/09 Mum went to GP with severe jaundice and was advised to go straight to hospital for admission. On this day she had an ultrasound and a ct scan and was advised by doctor in afternoon that there was an area of shadowing on the pancreas although he was not prepared to say more than that until the meeting on the following monday.
Following the MDM meeting, Mum had an endoscopy and was fitted with a stent to ease the jaundice.
Mum was discharged from hospital on the sunday, after 10 days, having originally been admitted and given the impression that she would be home in several days after having her gall bladder removed (which did not happen). When she was discharged she was given a letter to take to her GP on the monday when she had to return for further blood tests. On opening the letter, we found that mum had been diagnosed with pancreatic carcnioma with biliary tract obstruction, but no one had explained this or spoken to mum about this prior to her discharge.

My aunt has been brilliant ( she is a consultant histopathologist) and has been on the case challenging consultants etc regarding how mum found out her diagnosis. Subsequently we had an appointment with the specialist cancer link nurse who was really good and explained all the scan results for the first time. The CT scan revealed a 3cm mass within the neck of the pancreas, with involvement of blood vessels. A referral was made to Kings Hospital, London for their opinion. Following the MDM at Kings 2 weeks later, they replied stating that the tumour was irresectable due to the vessels being involved,although it was localised and had no liver metastases. A referral was made back to the hosital for chemo and palliative care. Mum quite relieved that surgery not an option.
Mum continued to have back pain, which she put down to pulling muscles in her back some time before, but now appears to have been related to the tumour. Referrals were made to the hospice for pain management and palliative care as well as a referral for chemo.
Mum went back to the hospital on weds 10 june for a biopsy. Following this she experienced complications and an extremely low blood pressure which was not dealt with soon enough or successfully. On friday 12 june I was advised that mum was dying of renal failure. On 15 June 2009 I managed to get her a place at the hospice for whatever time she had left. I was told that afternoon she had hours to go. She lasted another 4 days until she died peacefully on 18 June, 4 days after my 29th birthday.

I was advised that pancreatic cancer would be put as cause of death which i challenged due to short time since diagnosis and the tumour being small and locally invasive with no sign of spreading elsewhere. A post mortem was carried out the folllowing week and she actually died of peritonitis casued by her gall bladder rupturing (as this had still not been dealt with either). The tumour was also found to be nearer 8-10 cm and was almost attached to her stomach.

As I write this I am preparing to say a final goodbye to my mum on wednesday 15 July 2009, less than 2 months after her diagnosis of a disease that she didn't get the chance to fight.

Rachel