Lisa, Nadine, Joyce & Robert
Robert was 72 when he was diagnosed with inoperable pancreatic cancer. After seeking a second opinion and having chemotherapy, he was able to have an operation and is now recovering at home. His daughters Lisa and Nadine and his wife Joyce tell the story.
Our amazing dad/husband Robert was diagnosed with inoperable pancreatic cancer in November 2022.
He was misdiagnosed, but kept losing weight
He was initially diagnosed as a new type 2 diabetic in April 2022 with no previously known pre-diabetes. Well in himself, living life to the full, holidaying and spending time with his family he continued to lose weight; 2 stone in less than 6 months. When he informed the GP practice he was simply told that the weight loss was due to his metformin, the medication he was given to manage his diabetes.
As a family we were not happy that he was losing so much weight whilst continuing to follow a healthy diet. We pushed for a CT scan as he had lost well over 10% of his body weight. Within days of the scan… BANG! He was informed by his GP that he had inoperable pancreatic cancer.
The outlook was poor
Dad was referred to the local hospital where he was seen by specialist pancreatic nurse, who informed us that dad’s prognosis was very poor and that he would have palliative chemotherapy. At a later date he returned to see the pancreatic surgeon at our local specialist HPB hospital who confirmed that dad’s only option was palliative chemotherapy to give him a possible 6-10 months.
Dad, along with us all, was simply distraught, shocked and numb. We left the hospital thinking that that Christmas was going to be our last… how could this be happening?
We wanted a second opinion
Heartbroken, numb and in all honesty feeling let down and fobbed off by the hospital we set about searching for trials, consultants and ultimately more time. After reading numerous articles and papers, and sending emails to consultants, a surgeon from another trust emailed us back saying that dad was not suitable for a trial but that he wanted to see his scans and blood results.
Fast forward to Christmas Eve 2022 and a telephone consultation with the surgeon later, and he said that with FOLFIRINOX chemotherapy first he thought he would be able to operate.
We saw the oncology team in the new year and discussed the recommendations from the surgeon. They were concerned about the impact of FOLFIRINOX due to his age. Dad fought and fought for it and they finally agreed to give him one course and see how he tolerated it.
Robert was able to have a major operation
Dad had 11 cycles of FOLFIRINOX with no side effects, and our surgeon saw a reduction in dad’s ca19.9. The PET scan showed no change in the tumour and there was no metastasis, so they decided surgery could go ahead.
Surgery took place on Tuesday 25th July. He had what turned into a 10 + hour operation to remove his pancreas, spleen, duodenum, gallbladder, part of his stomach and bowel and part of a vein. The operation was huge, which he was aware of, but he was determined to have it. I don’t think any of us realised how big the surgery was going to be.
Recovery is a slow process
Dad stayed ventilated and in critical care for a further week, then moved to the ward. His recovery is slow, he’s had pneumonia and sepsis since.
After 5 weeks, dad has now come home from the hospital. He’s now physically fitter, but his appetite, confidence and mobility have taken a massive knock and he has been working on his rehabilitation alongside the physios and nurses on the ward.
Recovery is going to be long. But he’s on the right path and determined to get there.
Robert before treatment, having chemotherapy and back home after surgery
We really valued the second opinion
It’s still a slow process to full recovery but we are thankful that dad’s cancer has been removed. We were very lucky to have a surgeon who believed in Dad and was able to operate even when others said they couldn’t. We will never be able to thank his surgeon enough.
It’s sad that your care changes on your postcode and that people are not automatically offered alternative choices. How one specialist hospital to another can be so different, one sends you home with no hope and another offers you the opportunity to hope. As a family, if we can offer any advice to anyone going through this or similar, it is don’t just take one person’s opinion, ask for alternatives, question and challenge decisions to support your own care… after all it is your or your loved one’s life.
Robert and his family
Lisa, Nadine & Joyce