A forum for any other issues around pancreatic cancer

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tell us your experiences of diagnsis of pancreatic cancer

Postby Support Team » Sun Jan 13, 2008 9:29 am

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
Posts: 29
Joined: Sun Jul 08, 2007 10:51 am

Reply to administrator

Postby angelinamacc » Thu Jan 17, 2008 5:28 pm

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
Posts: 302
Joined: Thu Sep 04, 2008 10:03 pm

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby Ellie » Sun Sep 14, 2008 7:32 am

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
Posts: 1
Joined: Fri Feb 06, 2009 6:38 pm

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby molly1958 » Sat Feb 07, 2009 5:39 pm

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
Posts: 12
Joined: Mon May 18, 2009 4:46 pm

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby rach » Mon Jul 13, 2009 9:41 am

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

suri
Posts: 6
Joined: Fri May 13, 2011 8:37 am

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby suri » Sat May 28, 2011 12:28 pm

Hello

It seems that there are many difficulties associated with the diagnosis of pancreatic cancer. My husband was diagnosed in late January this year after several months of being unwell. His symptoms began in about October 2010 when he was experiencing severe back pain, which was made worse when lying down and would not respond to any analgesics. His blood glucose levels had also been erratic and increasing since about May 2010, having been relatively stable for several years. He is a diabetic and had been on oral medication for about 12 years. He had also been losing weight and had lost approximately 5 kgs in a couple of months. He had also been very tired and lost motivation to engage in his usual hobbies and daily activities. In November, he became very ill and was diagnosed with pneumonia. All of this was very unusual for him as he had been until then, extremely fit and healthy. I went with him, for the first time in 26 years, to visit his GP and shared my concerns about the symptoms he had been experiencing. However, she believed that they were due to his pneumonia, coughing and the normal progression of diabetes and refused our request (and that of a hospital registrar, who had diagnosed the pneumonia) for a referral to a specialist physician. At this stage, I had been very worried and had done considerable research into the possible causes of his illness and strongly suspected a problem with his pancreas. I shared this with the GP, who disregarded my concerns and treated them with indignation and derision. My husband returned to see her on a weekly basis until Christmas. She treated himduring that time, with two further courses of antibiotics,blood tests, a ventolin inhaler, a peak flow meter and three chest xrays. This was despite his repeated requests for a more extensive internal investigation.It was blatantly obvious to both him and me that the cause of his back pain was neither bacterial, skeletal, nor muscular and we continued to be worried about his soaring glucose levels, lethargy and weight loss. Following a brief holiday where he began to experience severe stomach pain in addition to the back pain, he returned to the GP and requested a CT scan. She finally agreed to an ultrasound, which revealed a large gall stone, but the pancreas could not be seen at all. My husband returned to her the next day for a specialist referral and again requested more follow up with a CT scan, but this was refused as she said that she had tested his serum amylase and lipase levels, both of which were within a low to normal range, and that clearly, the gall stone was the cause of all his symptoms. He explained that he had experienced gall stone pain in the past and this was nothing like it. She ignored this and wrote a non urgent and very scant referral to a surgeon.

Subsequently, several phone calls later, we managed to obtain an urgent appointment wih a surgeon, who assumed he was going to be removing a gall bladder, until we described to him the range of symptoms my husband had been experiencing. I asked the surgeon if he thought there may be a problem with my
husband's pancreas and he agreed that this could be the case and suggested a CT scan. It was now early January. The CT scan revealed a dilated pancreatic duct and my husband was referred for an endoscopic ultrasound which revealed, via fine needle aspiration, a 2.7cm papillary mucinous tumour in the neck of his pancreas. Further CT scans revealed that the tumour was locally advanced and encasing several major blood vessels. It was therefore deemed inoperable and he was offered palliative chemotherapy with gemcitabine, to be followed by radiotherapy combined with 5FU chemo.

He has now completed three cycles of gemcitabine and is relatively pain free as a result. A recent CT scan has suggested that the tumour is shrinking. However, the scan also revealed a lesion on his liver, which has since been diagnosed by ultrasound, as a transient hepatic attenuation difference, rather than a spread of his tumour. We hope they are right, although neither of us has much confidence in the medical profession following our incredibly frustrating marathon journey. We wonder whether anyone else may have experienced this particular type of liver lesion and what the outcome was?

Next week, my husband commences a six week course of radiotherapy/chemotherapy, which we hope will continue to shrink the tumour and further palliate the symptoms. He tolerated the gemcitabine reasonably well, although nausea and weight loss had been a major concern, as well as exhaustion. He also experienced a bowel obstruction of unknown origin which led to an overnight stay in hospital. He had lost about 15 kgs in total, but has recently regained about 3 or 4kg, which is helping him to feel better as he has been able to start re-engaging in hobbies and life again.

Our experiences have not been with the UK health system. However, having read many very moving posts on this forum, it appears that the problems with early diagnosis are universal, suggesting that considerably more research needs to be completed into this awful disease. Like so many others who have posted on this site, our experiences of the past few months have been horrendous. It has been a roller coaster ride of highs and lows, which perhaps could have been minimised had our GP chosen to listen to and take much more seriously, the concerns we expressed so many months ago. Neither of us has a medical background and our knowledge is limited. However, through dogged determination, rigourous research and assertiveness, there is at least a glimmer of hope that my husband's tumour may have been caught in time to prolong his life. It is not and should not be the responsibility of a patient or their relatives to diagnose such a lethal illness.

We both hope that the recounting of our experience may be of some help to others.

Susie

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby PCUK Nurse Jeni » Tue May 31, 2011 10:47 am

Susie,

Thank you so much for sharing your story here.

Well done to you and your husband for persevering and for getting the diagnosis you had suspected.

We would like to wish your husband all the best for his continuing treatment.

KR,

Jeni.

Tinamackelden
Posts: 2
Joined: Mon Mar 25, 2013 9:58 pm

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby Tinamackelden » Tue Mar 26, 2013 9:02 pm

I live in France so the health care is different. I went to the doctors 3 weeks ago with pain in my abdomen and was sent for an ultrasound and blood tests the next morning as she suspected gall stones, the ultrasound showed no stones but he thought there was a mass in the pancreas so 2 days later I had CT scan which proved this, went back to doctor with results who telephoned a professor at the hospital and got me a consultation within 4 days, he then arranged an appointment with the anaesthetist 5 days later and an appointment was given for me to be hospitalised last monday for biopsy and endoscopy I satyed in till wednesday then returned home went back on thursday for an MRI and had second consultation yesterday where I was told I had cancer in the head and tail and cancer spread to liver, apparently I am not having surgery don't know why as I don't speak much french but they are in process of sorting out chemo schedule.
So within 3 weeks I have had 1st doctors visit, all tests and diagnosis which I believe is pretty quick but I do not know what prognosis is due to language problem

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby PCUK Nurse Jeni » Thu Mar 28, 2013 11:15 am

Hi Tina,

This is excellent and really fast - much faster then in the UK.

I believe my colleague has emailed you directly.

Kr,

Jeni.

suef
Posts: 103
Joined: Fri Jun 25, 2010 12:58 pm

Re: tell us your experiences of diagnsis of pancreatic cancer

Postby suef » Thu Mar 28, 2013 9:18 pm

Dear Tina,

So sorry to hear your news. This is just to say that I am happy to help if you need things translating from French to English. I had my Whipple operation in Brussels, done by French-speaking surgeons, so I know a lot of the vocabulary and am happy to help. You can contact me via the moderators.

Good luck!

SueF

mickal
Posts: 3
Joined: Wed Jul 13, 2016 8:56 am

Re: tell us your experiences of diagnsis of pancreatic cance

Postby mickal » Thu Jul 14, 2016 9:27 am

Hi my names michael from australia and i was diagnosed in dec 08 after my urine changed color and i dropped a few kilos i had a whipples procedure in april 09 followed by 6 months of chemo since then i have been on creon which i cant seem to get right and its been 7 years since the operation alls going well considering ,cheers michael

Marmalade

Re: tell us your experiences of diagnsis of pancreatic cance

Postby Marmalade » Thu Jul 14, 2016 5:00 pm

My husband developed type II diabetes in October 2013. His GPwas very surprised as all his previous results had been stable at 6.5 and suddenly his blood sugar was 17.6 We immediately moved to a managed GI diet and the blood sugars dropped so no medication was given. It remained low until Dec 2015 when my husband went to his doctor because he was having intermittent bouts of diarrhoea and pain in his gut. His blood sugar had risen again to 14.6

The GP ordered a bowel scan at our district hospital using gas we got the appointment date two weeks later and this took place approximately 4 weeks after the GP consultation. He was told that he would be able to have some sedation but when he arrived the radiologist said that because of his atrial fibrillation he could not have sedation, no discussion. This process was excruciatingly painful for my husband and afterwards I discovered that many many people have terrible pain with this although the hospital described only "mild discomfort" on their information sheet. We then waited a week for an appointment letter and 3 weeks in total to actually see the consultant bowel surgeon to review the results. We were told that there was nothing in the bowel but a big mass, 7.5 cm, in the tail of the pancreas that looked like cancer but that further tests were needed to establish whether it was or not and that these would be discussed in the MDT (Multi Disciplinary Team). He ordered a contrast scan of my husbands pancreas for which we waited another two weeks and than a week before the results were discussed in the MDT so three weeks. Then another two weeks for an appointment with a GI consultant. It was the first appointment of the day and she was late, had not read the file and refused to give any opinion on whether it was a cancer or not saying that he needed another contrast scan, this time to include his liver and a biopsy. We asked if the two could be done on the same day because of all the fasting and the fact we live an hour away from the hospital. They could not guarantee it but said they would try and in fact did arrange the appointments on the same day three weeks later.

The consultant intervention radiologist who came from a major teaching hospital asked me why a needle biopsy was requested by the GI consultant as the MDT notes (MDT includes representatives from a major teaching and trauma centre) indicated a biopsy to be taken by tube inserted through the mouth and through the pancreas. he told us that a needle biopsy in this case was dangerous but that he would do it if we wanted him to! We did not feel qualified to say yes or no but were very stressed at all this delay and fasting and pain and messing about. I got angry and told the gathered assembly of nurses, doctors and also rans that I was taking my husband for some tea and that in one hour I wanted to see the doctor actually in charge of my husbands care with an explanation as to why a shoulder to thigh contrast scan had not been done following the bowel scan as is best practice, why my husband was refused sedation for the bowel scan when according to his consultant cardiologist (same hospital) there was not an issue, an apology and explanation as to why my husband was sent for a dangerous procedure that was not indicated and a proper plan of what was going to happen in the next 24 hours to get a confirmed diagnosis. I did say that I did not want any of the consultants so far involved to touch him!

At this point I telephoned my daughter who is a consultant in a University Hospital and major trauma centre and told her what was going on. She called the senior staff at her hospital who reviewed my husbands case at MDT and they called the district hospital that we were at. The upshot was a two and a 5 hour round trip to the University Hospital the following day where for the first time my husband was treated compassionately and quickly. He had the biopsy done there and then under heavy sedation and the diagnosis of ductal adenocarcinoma was given to him by the consultant who performed the biopsy.

We were referred to an oncologist at the district hospital who arrived 45 minutes late for our meeting (first pm clinic appointment), was abrupt got very cross with my husband when he asked how he was and my husband replied he would be better had he not been kept waiting 45 minutes and told my husband that with his heart problems, his age (83) and the fact that several blood vessels were involved he was unlikely to cope with chemotherapy and that he should arrange palliative care locally with his GP. The meeting lasted less than five minutes.

I have written to the MDT team leader who wrote back saying that all sorts of things had gone wrong but that they were hopeful of improvements…

Marmalade

sandraW
Posts: 1027
Joined: Thu Oct 31, 2013 5:38 pm

Re: tell us your experiences of diagnsis of pancreatic cance

Postby sandraW » Sat Jul 16, 2016 10:33 am

This is on behalf of my late husband Trevor.
We were never actually told what kind of PC he had.
The cancer was in the tail of the pancreas and had spread to the spleen.
First symptoms were pain, bloating and paler stools and tiredness.
Made first visit to GP October 2011 prompted by me, Trevor was never ill, after numerous visits he had a Ct scan in January 2012 and sigmoidoscopy a few weeks later said cause of his pain was due to Diverticulitis, we were never told at the time by either the consultant or the GP that the CT showed there was a shadow on his pancreas. I only found this out after Trevor had died when I contacted pals and they put me in touch with another body who wrote to the GP surgery and that was stated in their reply.
He continued to have pain but put it down to his diverticulitis, he then had a series of abscesses in his groin, September 2012 - February 2013 and was hospitalised twice, in February '13 the hospital found his sugar levels were very high, so he was put on Metformin by the GP.
He continued to have pain in the left hand side now going through to his back and extreme tiredness, the GP blamed the Metformin and changed the tablets to slow release, finally after numerous visits to the GP he was sent for an ultrasound on his Gall bladder.
Purely by luck whilst spreading the gel across his stomach the technician watching the screen spotted something on his pancreas which they suggested was a muchinous cyst, this was on the 1st May 2013.
He was called by the doctor the next day and told it was nothing to worry about but an appointment would be made with a consultant radiologist.
13 weeks later he attended the appointment, and was advised he would be sent for a CT scan.
3 weeks later on 21 August he had the scan, on the 23rd August the hospital rang to say that an appointment had been made with a different consultant for the 29th August when I checked I realised it was a surgeon.
When we met the surgeon he told us it was more than likely cancer, an appointment was made for 11th September 2013 for surgery, when 2/3rds of Trevor's pancreas and his spleen were removed.
Although the surgery was successful, 2 of the 6 lymph nodes removed showed cancerous cells, he had 6 rounds of 5FU chemotherapy before his CA19 markers rose dramatically, as the cancer had moved to his liver, so he was switched to Folfirinox for the next 6 treatments.
He then had a 3 month break which finished up at 5 months due to consultants holidays and delayed appointments, he then had a further 9 treatments of Folfirinox with some of the drugs being taken out or swapped until February when the treatment was stopped as his liver was failing he died 8 weeks later.
I hope we can get GP's to understand more about this dreadful disease sandrax

susan191052
Posts: 7
Joined: Fri Nov 11, 2016 1:17 pm

Re: tell us your experiences of diagnsis of pancreatic cance

Postby susan191052 » Mon Nov 14, 2016 2:39 pm

Husband was under the weather from early August but thought he had picked up a bug, in September we went on our 40th anniversary holiday to Mauritius, where he had vomitting and diarrhoea and was feeling lethargic. He ate little and drank only soft drinks. On our return on 2nd Oct, he went back to work some distance from home (hotel stays) He had, by coincidence, an appointment at his GPs for results from some blood tests on 7th Oct so left Lincolnshire on Thurs evening for the long drive home to S Wiltshire. During this drive he went yellow and was jaundiced. The GP thought he may have picked up Hepatitus A and kept an eye on him, however after a couple of weeks of no change the GP aranged for him to go to the fast track Jaundice clinic at our local hospital. here they descovered a growth via ultrasound and CT scan. They kept him in to build up his clotting capabilities for a laparascopic investigation (ERCP). During the ERCP they inserted a stent in the bile duct to allow a backlog of bile out and took a brush biopsy. A day later he was allowed home. Nobody really talked to him regarding the cancer before discharge, however, the discharge notes were still attached to the prescription notes which stated a probable pancreatic adenacarcinoma with provisional staging at T3 N1 M0, Nil in chest. What a Saturday night! Fortunately we have medics among family (an endocrinologist) and friends so we got to understand the information through them. We were then asked to see the team at the specialist centre in our area (Southampton), some 35 miles away. The outcome of this is that my husband is having a Whipple procedure on 24/11/16. His GP has been supportive and phones regularly from the surgery as late as 9.45 pm.

25/11/2016
James had his Whipple surgery yesterday at University Hospital Southampton, Until 11am we weren't sure it would happen because there was not then an available bed in Surgical HDU but one did become available so at about 2pm his surgery was started. At 9.45 I called to find he was still in recovery. I called HDU at 11pm and he had just arrived there, the staff member asked how he was and he was fine but his message to me was "Dont drink too much gin and remember to feed the dogs"! As he works away I always feed the dogs feed the dogs, as for the gin I was not drinkin as I had to drive this morning. My daughter and I travelled together to visit him along with our 4 month old granddaughter and I went to see him first (grumpy old git!) and he was complaining that Physio had messed with the numerous tubes and drains attached to him and nothing was in the right place.... He was very sleepy which I had expected but he had convinced himself he had overdosed on self administered painkiller (morphine?) even though that is not possible. I spent just 10s of minutes with him and then our daughter went to see him whilst I was on Grandma duty. Sometime later we learn that he has been moved from HDU as he is recovering so well. The surgeon was very pleased with the op and all went according to plan with one exception: the tumour was touching a vein and they had to peel it off but by all account his surgeon Mr Abu Hilal is highly skilled to perform such a delicate operation. James has been very positive throughout and feels lucky that his cancer was found so early and could be removed. hopefully a good end to an interesting year. We have also discovered just how amazing our friends and neighbours in our small S Wiltshire village are. What a year 2016 has been; we met two new granddaughters one in Los Angeles and one in Salisbury UK, we celebrated our 40th wedding anniversary with a party on the day in July and a holiday in Mauritius in September and a meeting with Mr Whipple in November. As for the surgeon; we won the postcode lottery there! We appreciate we are not yet out of the woods but we are glass half full people, there is no point in being anything else - positivity helps!

12.03.2017
James' chemo going well, the oncology department at Salisbury District Hospital has been brilliant and has gone above and beyond... with us. James has just started his third cycle of Gem-cap and the side effects have been limited to tiredness. He is eating well and he looks brilliant, still joking around. We are off for a short break to Bologna at early May which gives us something to look forward to and our son and his family are planning to visit in July from Los Angeles when the chemo should be finished. In fact our son, Oliver, paid a surprise visit in February to check up on us, we were both thrilled and it gave us a real boost! Unfortunately we have spent far too much time at the hospital this last week, J got an abscess on a tooth and his temperature lifted so he had to visit and get checked out, his neurofil count was fine so he is now on antibiotics, however his temperature raised again on Saturday at 1am so it was back in to get checked again but still ok... He seems fine now but hoping it doesn't happen again.

30/062017

How time flies - James finished his 6 cycles of GemCap yesterday. Up until the last 3 to 3 months it all went well with little or no side effects but he has suffered severe constipation and bloating causing discomfort and wind from both ends. I expect he has got off lightly.After cycle 3 we took a week out and went to Italy and it was after that that things went downhill. His oncologist does not expect to find anything untoward on his final CT scan at the end of July, time will tell. He has been able to enjoy family time with 11 year old granddaughter and her baby sibling who is just a year old. He has had a brilliant attitude mostly and support from the locals in our south Wiltshire village has been fabulous. Family and friends around the globe have been rooting for him and praying for him, the 5 churches in the beautiful Wylye valley where we live, have him on their prayer list, a friend who is a clairvoyant has been sending the best angels to help him, not that we believe in such stuff. Nor are we church goers but every little helps...... .

All the medical staff we have come across have been truly wonderful, from the surgeon who performed the Whipple procedure to the lowliest auxillary nurse, we cannot thank them enough. But what a journey. I know there is likely more to come but James is determined to beat the statistics. His first goal was to be at the fete dinner this year (He co-ordinates the village fete) - he didn't want to be on the 'absent friends' toast. He hasn't made it yet but it on the 2nd September and we reckon he will make it. In the meantime we are off to France next week for some R&R at his brother's place, after that we are having a post-chemo bbq which our next-door neighbour GP thinks id a hoot. We are expecting 60+ , we are providing the food & drink and there will be a collection box for Macmillan; the other member of the village 'chemo club' and we have received terrific support from them, they are having a stall at our village fete and the other patient's son is running a 10 hour stint along the thames path and the running 2 marathons in Morocco the raise funds for them, he will also be at the fete in his kit. Before the fete, our son and family (wife and son of 5 and daughter of 1) will be visiting from Los Angeles so we are keeping busy.... Good luck everybody. And thank you for the support.
Last edited by susan191052 on Fri Jun 30, 2017 4:54 pm, edited 2 times in total.

susan191052
Posts: 7
Joined: Fri Nov 11, 2016 1:17 pm

Re: tell us your experiences of diagnsis of pancreatic cance

Postby susan191052 » Thu Dec 01, 2016 9:05 pm

susan191052 wrote:
> Husband was under the weather from early August but thought he had picked
> up a bug, in September we went on our 40th anniversary holiday to
> Mauritius, where he had vomitting and diarrhoea and was feeling lethargic.
> He ate little and drank only soft drinks. On our return on 2nd Oct, he
> went back to work some distance from home (hotel stays) He had, by
> coincidence, an appointment at his GPs for results from some blood tests on
> 7th Oct so left Lincolnshire on Thurs evening for the long drive home to S
> Wiltshire. During this drive he went yellow and was jaundiced. The GP
> thought he may have picked up Hepatitus A and kept an eye on him, however
> after a couple of weeks of no change the GP aranged for him to go to the
> fast track Jaundice clinic at our local hospital. here they descovered a
> growth via ultrasound and CT scan. They kept him in to build up his
> clotting capabilities for a laparascopic investigation (ERCP). During the
> ERCP they inserted a stent in the bile duct to allow a backlog of bile out
> and took a brush biopsy. A day later he was allowed home. Nobody really
> talked to him regarding the cancer before discharge, however, the discharge
> notes were still attached to the prescription notes which stated a probable
> pancreatic adenacarcinoma with provisional staging at T3 N1 M0, Nil in
> chest. What a Saturday night! Fortunately we have medics among family (an
> endocrinologist) and friends so we got to understand the information
> through them. We were then asked to see the team at the specialist centre
> in our area (XXXX - edited -moderator), some 35 miles away. The outcome of this is that
> my husband is having a Whipple procedure on 24/11/16. His GP has been
> supportive and phones regularly from the surgery as late as 9.45 pm.
>
> 25/11/2016
> James had his Whipple surgery yesterday at XXX (name removed, moderator) ,
> Until 11am we weren't sure it would happen because there was not then an
> available bed in Surgical HDU but one did become available so at about 2pm
> his surgery was started. At 9.45 I called to find he was still in
> recovery. I called HDU at 11pm and he had just arrived there, the staff
> member asked how he was and he was fine but his message to me was
> "Dont drink too much gin and remember to feed the dogs"! As he
> works away I always feed the dogs, as for the gin I was not
> drinking as I had to drive this morning. My daughter and I travelled
> together to visit him along with our 4 month old granddaughter and I went to
> see him first (grumpy old git!) and he was complaining that Physio had
> messed with the numerous tubes and drains attached to him and nothing was
> in the right place.... He was very sleepy which I had expected but he had
> convinced himself he had overdosed on self administered painkiller
> (morphine?) even though that is not possible. I spent just 10s of minutes
> with him and then our daughter went to see him whilst I was on Grandma
> duty. Sometime later we learn that he has been moved from HDU as he is
> recovering so well. The surgeon was very pleased with the op and all went
> according to plan with one exception: the tumour was touching a vein and
> they had to peel it off but by all account his surgeon Mr XXX (Name removed - moderator) is
> highly skilled to perform such a delicate operation. James has been very
> positive throughout and feels lucky that his cancer was found so early and
> could be removed. Hopefully a good end to an interesting year. We have
> also discovered just how amazing our friends and neighbours in our small S
> Wiltshire village are. What a year 2016 has been; we met two new
> granddaughters one in Los Angeles and one in Salisbury Uk, we celebrated
> our 40th wedding anniversary with a party on the day in July and a holiday
> in Mauritius in September and a meeting with Mr Whipple in November. As
> for the surgeon; we won the postcode lottery there! We appreciate we are
> not yet out of the woods but we are glass half full people, there is no
> point in being anything else - positivity helps!

02/12/026
James recovering well and evidently the plan is for him to be discharged on Monday. He is physically well, digestion not totally up to it yet but it is exactly a week since Whipple today; just amazing. He had CT scan today to check his digestive system was ok, it was but he has a "lazy stomach" !