David, diagnosed in 2016 with inoperable pancreatic cancer

A story written by Anne about her beloved husband, David

David died in August 2016, aged 68 from pancreatic adenocarcinoma, 10 days after receiving a definitive diagnosis. 

This is David’s story.

David retired to Cambridge to be near our daughter and her family. He never smoked, rarely drank alcohol, ate healthily and took regular exercise. He enjoyed gardening, orienteering and Tai Chi, was a member of the parish council and was a very active stamp collector displaying his collection and helping to organise conferences.

In April 2016 he developed severe, constant abdominal pain (right upper quadrant) radiating to his back and sought help from his GP. Blood tests showed nothing remarkable and he was referred to hospital for an ultrasound. On May 15th the scan showed no sign of gallstones so the GP had little further interest. I suspected pancreatic cancer, it was on the Readers Digest list of diseases that doctors fail to spot.  I asked David to ask the GP to check it out. David attended the GP surgery on a weekly basis with increasing pain. Eventually he was told if it got worse the GP would refer him as an emergency. David continued to return, only to be given codeine tablets.

By the end of May, the pain was unbearable and the emergency on-call doctor referred him to hospital, the note suggested for suspected appendicitis. He was given morphine pain relief and seen by a colorectal consultant. Tests were inconclusive but atypical pancreatitis was suspected. Referral to a pancreatic specialist was proposed but later dismissed, “the scan does not show pancreatitis so referral to a pancreatic specialist is not appropriate”. Then lymphoma was suspected and David was discharged with analgesics to wait for an EUS biopsy.

Following discharge on June 2nd David was called in to the GP who was annoyed that David has managed to get admitted to hospital. David told him that lymphoma was suspected, the GP laughed this off, but referred David to an upper gastrointestinal specialist, with an appointment in 7 weeks time. David was horrified at this delay, but was told this was the first available appointment. It was not even on a cancer referral pathway, even though David had told him lymphoma was suspected. It was also in the discharge letter from the hospital.

On June 13th I accompanied David to an EUS biopsy. The interventional radiologist told us that David “may see him again as he could do a nerve block which is very effective for your type of pain. Remind the doctors, they don’t always think of it”. I thought, your type of pain probably means cancer.

On June 24th, the colorectal consultant phoned David and told him it was “good news – you don’t have a lymphoma, I am referring your scan to the pancreatic MDT” (Multi Disciplinary Team).

By July 4th David was very ill with agonizing pain and persistent vomiting. I thought he had an obstruction and contacted the GP surgery, the GP said he would visit promptly. After a long wait he turned up and was very dismissive. Eventually the GP agreed to readmit David to the hospital as an emergency. While he was making the arrangements he left a copy of the biopsy report out, we had not seen this report or had it discussed with us. The report described a diffuse mass, encasing the superior mesenteric artery (SMA) and continuous with the pancreas but no malignant cells had been identified. The request from the interventional radiologist to the histologist had been to test for suspected pancreatic adenocarcinoma. A mass around the SMA is generally a stage 3 cancer and inoperable.

On July 5th with David now on the Hepato-biliary ward the doctors on rounds told him it was definitely a pancreatic cancer but it was essential to get a definitive biopsy before treatment could be planned or the nerve block given. An X-ray on July 8th showed a duodenal obstruction and David had patient controlled analgesia (PCA) pain relief and TPN (intravenous food) and was reasonably well. But on July 11th he was told to eat again. I was worried about this, if he was ill again they would cancel the biopsy, not that one had been booked yet. I begged him not to eat until the biopsy had been done.

On July 12th I arrived at the ward for the early afternoon visiting time, just as a doctor and several nurses, one with a resuscitation backpack were loading David onto the lift to go to the Intensive Care Unit (ICU). We found out later that David had eaten and spent the night vomiting and this had caused aspiration pneumonia and septic shock. He spent 10 days in ICU, though the later days were because there was no space on a ward to transfer him back to. The medical staff were reluctant to confirm when he was well enough to have the essential biopsy, two doctors escaped out of a different exit while I was waiting to talk to them and I had to ask another doctor 3 times before she would answer, this was on a Sunday night and the fact he was considered well enough for biopsy was written in his electronic medical notes available to all his doctors. By Wednesday 20th he was still in ICU and still no biopsy had been booked. This was the day I went back to the HPB ward and demanded to speak to his medical team to try and get a date for the biopsy. It was also the day when the ICU nurse overheard David asking me to go to the papers over this long and unexplained delay in even booking the vital biopsy, without which there would be no treatment decisions. Ten minutes later the biopsy appointment had been booked for the Friday. The biopsy was nearly cancelled after a miscommunication over the medications he had been given but fortunately his appointment was moved to the end of the session when the medication had worn off and the biopsy was finally done.

This time the biopsy did find cancerous cells and the diagnosis of pancreatic adenocarcinoma was confirmed on August first. During this time David had developed atrial fibrillation (due to the septic shock) and the cancer had spread to his liver, the bile duct had become obstructed and he developed jaundice. There were ongoing problems with low blood pressure and high temperatures. Numerous attempts were made to fit stents and feeding tubes but never the nerve block as suggested by the radiologist despite our requests for this to improve his pain relief. But these interventions failed and he became progressively worse. Finally, a by-pass operation was scheduled for 10th August to relieve the blockages but he was too weak and this was not going to affect the cancer. As the cancer had spread he was no longer suitable for any clinical trials and chemotherapy and the site of the cancer had always precluded an operation.

On August 8th the ward sister and medical staff met with my daughter and myself and then David, the options were percutaneous drainage which could have made his condition worse by spreading the infection in his liver or palliative care in a hospice. David opted for the hospice and this decision allowed the fitment of a continuous syringe driver to his pain medication though it took almost 24 hours for the hospital to implement it. At this point after weeks in the hospital on the manually administered pain relief all David wanted was a peaceful nights sleep rather than having to press the button to administer his pain relief every 15 minutes. He was transferred to the hospice on August 10th conscious and talking to us, but by Thursday morning he was unconscious and restless, he never regained consciousness and on the night of Friday 12th he died.

Pain relief was an ongoing problem. He never got the nerve block. He had patient controlled analgesia (PCA), the button he had to press frequently to obtain intravenous pain medication. This frequently ran out and there were lengthy waits for someone qualified to set it up again. When away from the ward for frequent X-rays and scans the PCA was disconnected as otherwise a qualified nurse would need to accompany him, without the PCA a porter could take him and leave him. He was told the procedures would only take a short time but unforeseen delays would often occur. On one occasion I tracked him down to the other side of the hospital in severe pain waiting for a venous access procedure that had been cancelled. A year later in response to our complaint with the hospital we were told by a specialist nurse that the nerve block was never an option, it could have been done percutaneously but it would have to be arranged separately and done at a different hospital. He never had a realistic chance of this pain relief although the radiology specialist had indicated it could be very effective (literature suggests an 80% success rate) for this type of pain and the obvious benefits to reduced medication and patient well-being in not requiring the PCA. This expert radiologist was not consulted in the response to our complaint.

When I read the biopsy report on July 4th I realized from the description of the mass around the SMA that it was already inoperable and the doctor must have known it would progress to gastric outlet obstruction, so we asked why nothing had been done until his emergency readmission on July 4th and even then a second biopsy took weeks to arrange. From the notes that we have seen, no malignant cells had been identified in the first biopsy and the report was available on June 15th. When we asked why nothing was done until June 24th we were told the report had gone to the wrong doctor but that this wouldn’t have made any difference. All of David’s interactions with the medics were full of delays and difficulties in acquiring any urgency in progressing the investigations or accessing the correct specialists. The doctor at the hospice noted that David’s pain and some relief from it by sitting hunched forward was characteristic of pancreatic cancer, this was in his medical notes twice but no one before her seemed to pick up on this potentially diagnostic symptom.

All of us affected by pancreatic cancer know that it can be an aggressive cancer that often affects people with none of the lifestyle factors usually assumed to cause cancer. We know the symptoms can be vague and repeated visits to a GP often prove futile. Both GPs and patients need to be more aware of the symptoms if pancreatic cancer is to be diagnosed and treated sooner.