Sylvia, aged 60 when diagnosed with inoperable adenocarcinoma of head of pancreas

Background

I am writing this about my mum's history/experience with this disease. I am a nurse but not a cancer specialist.

She was a very healthy 60 year old when diagnosed in 2004 with this, leading a very active life and looking after my little boy.

Her symptoms were very slight backache and intense itching initially and then her colour started to change as the jaundice developed. This all happened from the July to the September 2004 when she went back and fro to the GP's only to be told its the heat, etc. Eventually she pleaded with them to do blood tests and in September she had the results and then things moved.

• Friday GP refered to hospital,
• Monday ultrasound scan followed by ct scan
• Wednesday seen by a consultant
• admitted on the Friday for an ERCP and a stent insertion

History about the diagnosis and treatment of the disease.

October 2004 a biopsy taken from the pancreas which came back negative.

This was repeated at the end of October and confirmed adenocarcinoma of pancreas.

This was a very stressful time as I, as the daughter, was given the original diagnosis of negative result to tell her. I knew this was inconclusive and felt that they should have explained that it is common to get a false negative because they can miss the tumour site when taking the biopsy.

November 2004 Was informed it was inoperable due to the close proximity of the tumour to major blood vessels and it would be dangerous to operate. She was referred to the oncologist.

November 2004 Seen by oncologist and entered into the Gemcap trial (gemcitabine and capecitabine 3weeks on and 1 week off)

Commenced chemotherapy end of November 2004

My mum had a plastic stent put in initially which was replaced every 3 months routinely up until October 2005 when a metal one was inserted.

March 2005 My mum became infected with suspected pancreatitis and treated with IV antibiotics. One blood transfusion has been needed for anaemia

March 2006 My mum became very unwell with obstructive jaundice, pancreatitis and neutrapenia needing IV antibiotics and oral antibiotics. She had an urgent extension of her stent because a metal one cannot be removed so more plumbing was done. She recovered slowly and since then has gained some weight.

Her chemotherapy continues to this date July 2006.

She continues on the trial and in all the time has missed only 2 weeks in total. It is good going - 21 months. Her oncologist is amazed that she has done so well and for some reason her blood counts have stayed up - normally the chemotherapy eventually causes them to drop so much that treatment has to stop. They do drop but rise again after the week off treatment. She has had very few side-effects apart from feeling tired. She can't stop the treatment for a break as the capecitabine is only available in the trial and the trial requires continuous treatment.

Her quality of life is amazing she enjoys going to Wales in a caravan and enjoys her time away.

She remains focused and at the same time very apprehensive as to what the future holds. My Mum did not want to know the whole diagnosis and the full prognosis. She becomes very anxious when her CT scans are due which is every 3 months which is understandable.

I hope this helps other people to have faith and to stay focused.