Pancreatic Cancer Patient Comments

My pancreatic IPMN might just have been discovered in 1999 if my persistent stomach and bowel symptoms had been investigated by CT scan. It's as simple as that. We all know that pancreatic cancers are almost impossible to spot: if all patients who presented with persistent symptoms, however vague, were sent for a scan, the GP wouldn't be left guessing, and all sorts of internal problems might be discovered before they went on to cost the patient their health/life and the NHS a lot of money. It seems almost a misuse of NHS funds that I am having all sorts of lovely CT views of my tumour now that it is inoperable, when just one view might have caught it when something could have been done about it.

This means more scanners, I guess.

Because of the nature of this sort of cancer, when I went to the GP in 1999 and was referred on to a specialist for full endoscopic bowel MOT, no symptoms of pancreas cancer showed up even with a biopsy of the duodenum. They did everything that was proper at the time, given the symptoms, as far as I can see.

My only grumble is that the diagnosis of 'Irritable Bowel Syndrome' effectively dissuaded me from going back to the GP. I had had my diagnosis, and there seemed little point in going back with the same symptoms for more of the same treatment (the endoscopy and biopsy hurt quite a lot). 'Irritable Bowel Syndrome' masks potential problems and seems merely to cover for the fact that symptoms are unexplainable. It should not be given before a full CT scan investigation has been carried out, in my view.

Sue B seems to have covered things in her response. Another thing, however, I would like to see is better and more thorough diagnostic procedure in the early days because it seems that the pancreas is an area which does not show up on current CT scanners. I hear there is one - the only one, so far as I'm aware - recently installed at a hospital in Hastings, that is a very much higher resolution (if that is the correct term) and can identify and locate much more accurately the smaller and more obscure cancer (and other) incidences.

You will remember that back in early July 2004, I had an ultrasound scan and was told that there was no evidence of cancer - huge sighs and tears of relief. A stent was fitted to relieve the blockage of the bile duct and was left in place for 13 weeks before further investigation. This time, the surgeon thought to take a biopsy of part of the duct and, lo and behold, it was cancer. I can't help wondering why this procedure was not carried out in the first place, when 13 weeks would have been saved. How has this affected my chances of survival?

An earlier diagnosis would, undoubtedly, have been beneficial to me, as a patient, and may even have saved the NHS some money. Also the next 2 scans (CT) did not show any sign of cancer and yet, when a Whipple operation was performed, there was a 6cm tumour in the pancreas. More than likely, the better scanner would have shown this up at least 6 months before the operation and the surgery might have been easier and possibly more effective.

So - we need more of the new, high quality CT scanners and also acknowledgment and recognition of the fact that speed is of the essence in diagnosis and treatment. Not only could this save and improve lives but it would be economically better for the NHS in the long run.

That's about it, really - other than a giant magic wand to make it all go away ...

Editor's note: In fact this patient also had chronic pancreatitis, possibly due to prior gallbladder surgery, and that would have masked the pancreatic cancer in CT scans. Although an enhanced CT scanner may help diagnosis in many patients it may not have helped in this case as the cancer was just showing as a hugely inflamed area - and not a solid tumour.

You are right in your headings, however, I would pick up on something which Dennis said at the PanLive meeting last week.

We need to be lobbying for the government to target the low surviving cancers by setting very strict and measurable improvement targets for the next 5, 10 and 20 years. They need to encourage targetted research for each of these cancers and to look at the root cause of the low survival rates. In the case of pancreatic cancer, it is to do with early diagnosis. It is not acceptable that the survival rates for pancreatic cancer stay at the same levels as they have been for the last 40 years.

Funding / Prize should be available to target research into this early diagnosis (ideally through some easy screen) - based on the 'Harrison clock' idea, as well as being available to publicise information to GP's, providing GP's with the ability to make early referrals for scans if suspected and information to the general public about symptoms.

I was in Edinburgh this week..... guest of the Royal College of Surgeons, Edinburgh..... In the course of the time there I spoke to a lot of surgeons, many of whom were gastro-intestinal or hepato-biliary surgeons. Almost all of them agreed that better means of diagnosing PC early was one of the biggest challenges but could improve survival rates. But earlier diagnosis also meant greater awareness was needed of the symptoms, both by GPs and by patients.

I agree with you that research into higher mortality cancers should be given more funding.

It is a sad fact that Pancreatic cancer is rather neglected in the public's mind; almost no one seems to realise just how deadly this thing is, how little research funding is allocated to it and how little support there is for sufferers as compared with breast cancer for example. In Hereford there is a very nice new breast cancer support place - opened by Prince Charles last year - but when I asked if Janet could avail herself of their councelling services, the answer was "no, our funding is ring-fenced for BC only".

Who will do something for the "other", deadly cancers? - people like yourself are doing a wonderful job but you, researchers and professional carers need financial image of need. Is there a case for amalgamating effort for the few less fashionable high mortality cancers under a single banner? Today Janet's solicitor called to make a change to her will and he told me that he was glad to be made aware of our cancer's special need...people like him have to make recommendations to clients from time to time, and they should know.