My 85 year old mother is at the end stage of bile duct cancer and is currently in a hospice. She was first diagnosed 18 months ago and we found it difficult to find information on this type if cancer and what to expect, as it is relatively rare. I would like to give details of her journey here in order to help others who may have been diagnosed, with the proviso that each situation is different.
My mother was diagnosed aged 84, having recently recovered from aortic heart valve replacement. She developed jaundice, was hospitalised and had a stent fitted. The tumour was discovered during the endoscopic procedure and biopsy showed it to be malignant. She went for a routine follow-up appointment after the stent was fitted and was told the bad news. It came as a very nasty shock to us both.
She then had an appointment with a hepatic consultant and nurse, who informed us that surgery - Whipple Procedure - was the only curative treatment but not without risks and the nurse outlined the palliative options. No further tests, staging or prognoses were ever undertaken. She saw the consultant every 3 months but was relativley asymptomatic for the best part of a year, although she became thinner, weaker and frailer as time went on. 3 months on, she developed jaundice again and was hospitalised and a new permanent metal stent fitted, which precluded the Whipple surgery. She had been debating whether to have the surgery and the decision was made for her at this stage, though supported by her family and the doctors treating her.
About a year after diagnosis she developed serious diarrohea and lost a lot of weight. Her appetite was poor and she had trouble with nausea and heartburn and odd pains which came and went but nothing intolerable. She was referrred to a dietician but the appointment took 3 months to come through, which was too late. She managed Christmas lunch and to go out for several meals over Christmas but was very tired and sleeping a lot by then.
After Christmas, she went downhill. She suffered hallucinations and was diagnosed with diabetes, district nurses came every day to inject insulin, then she collapsed outside and was taken to hospital with low blood pressure, then fell whilst out on her own and it became clear that she could no longer go out unaccompanied, although she had been living independently up until then. She was referred to the community nursing team and was vomiting most nights by then and eating very little. The plan was to get her in to the hospice to stabilise her for a couple of weeks and then home with a care package. Meanwhile, the district nurses came back to give her antinausea medication daily via a syringe driver but she woke up in great pain a couple of days later and was hospitalised again They thought she might have a ruptured bowel and was treated with antibiotics and morphine which she reacted badly to. These were stopped and she recovered enough to be transferred to the Hospice where she was made comfortable although virtually bed-bound until she developed jaundice yet again, which has been worsening. We are now just awaiting the end - just over 3 weeks since she was admitted to the hospice. It is probable that the cancer had been there for a while before diagnosis and we were told at first that it was a small and slow-growing tumour. I hope that this may help others to have a better idea of what could happen with this type of cancer. The symptoms of digestive upset, tiredness, weight loss, nausea, vomiting, diabetes, weakness and wasting are coomonplace towards the end and the best advice I would give would be to get support as soon as possible. The hospice has been great.
