Are we getting the best treatment?

[svalentine21]

My wife, Karen, has locally advanced inoperable adenocarcinoma in the head of the pancreas - diagnosed August 2007. It has not metastisised to any other organs as far as we know. She has gemcitabine + capecitabine in four week cycles with a week off after three sessions (although they have recently removed the capecitabine in an attempt to ensure she's fit enough for the third treatment each cycle).

We know that this is the standard treatment, but it has been clear since the beginning that this is basically palliative care, containing for as long as possible. We don't want that; we want to beat this thing. Karen's only 39, very fit and her tumor shrank by up to 50% between the start of treatment and the first 12-week scan. We're therefore starting to think about trying to attack it with more aggressive treatment. We've recently asked them to consider surgery again.

Does anyone know of anywhere that treats pancreatic cancer of this type in a more aggressive way? It's so depressing to deal with oncologists who are sure you're going to die soon and don't, therefore, look for opportunities to really try to beat this cancer.

[mel72]

A friend of my brothers wife has been diagnosed with pancreatic cancer this year, and he contacted the clinic in america treating patrick swayse, He is waiting their decision as to wether they will treat her, its pioneering treatment for pancreatic cancer.Its worth a try, my mum died this year of this awful disease and if we could have referred her we would have. Good luck.

[Support Team]

Trying to find the best treatment is the subject of research. New treatments need to be investigated in trials to see whether they provide better outcomes than current standard treatments either in terms of increased survival or more time before progression of cancer or with reduced side-effects or improved quality of life.

There are many trials being run in the UK - either nationally at many centres or a few selected centres or at a single centre/hospital. The national trials are discussed and approved by the NCRI (National Cancer Research Institute) Upper GI (gastro-intestinal cancer ie pancreas, bile duct, cancer of unknown primary, liver, oesophagus ie gullet and stomach) Clinical Studies Group including a committee of some of the top specialists ie surgeons, oncologists, pathologists, statisticians in the UK and patients representatives. You can see a list of trials available on the Pancreatic Cancer UK web-site.

There are different types of trials eg Phase 1 to test the safe dose of treatments, Phase 2 to see whether there is benefit in a small sample of patients and Phase 3 to see whether the new treatment is in fact better statistically on a large sample of patients compared to standard treatments eg 300 having each type of treatment being compared.

Every patient is different and some will do well on all types of treatment and some even with no treatment at all. I have heard of patients surviving 4 years with just the standard treatment of gemcitabine or a year or 2 with no treatment but they are the unusual ones. Statistics quoted on survival are just that - the average survival for the entire population of patients - some will do worse and a few will do much better. Research is needed to tell us why individual patients do well or poorly with a given treatment as well as trying to find treatments that overall provide better outcomes.

Outcomes can certainly depend on the fitness and age of the patient when diagnosed and whether the cancer is just in the pancreas or has spread to the liver or whether it is possible to remove it by surgery. However I have known both patients in their 80s and in their 30s or 40s do much better than average, I have known patients with spread to the liver do much better than average on just standard treatment and patients who were inoperable to do much better than those who had surgery. You can read many of those stories on the biographies page of the Pancreatic Cancer UK web-site but they are all just individuals and what worked for them may not work for the majority of the population of patients.

Outcomes can also depend critically on the exact type of pancreatic cancer and determining that is complex - some better outcomes for what has been termed pancreatic cancer are often rarer types such as lymphoma, sarcoma, peripheral nerve sheath (Schwanna), neuroendrocrine, ampullary, adenosquamous, cystic, IPMN etc although even some of those patients can do less well as survival is all just statistical with a wide spread of some getting only a few days or weeks after diagnosis and some 1-5 years or more - especially with neuroendocrine type. The majority of patients do however have the aggressive adenocarcinoma type pancreatic cancer.

If recent press reports are to be believed, Patrick Swayze is having a trial treatment but until that trial completes we do not know whether statistically that treatment is better than standard treatments or indeed any better than treatments under trial in the UK.

My husband survived 27 months with inoperable , locally advanced adenocarcinoma pancreatic cancer dx at age 48 using treatment available in the UK outside trials and on the NHS and was able to return to work (working around treatment) once he had got over the shock of diagnosis and the chemotherapy had reduced the pain which was his main symptom.