'He never had a chance' - wife of Bushmills farmer who died from pulmonary artery sarcoma highlights rare form of cancer

The words of Christine Calvin speaking about her late husband Robert who died at the age of 53 from one of the most aggressive cancers there is – a rare cancer called pulmonary artery sarcoma.

Sarcoma is a rare cancer of the bones and soft tissues that affects around 5,300 people in the UK each year. Because its symptoms - pain, swelling, and unexplained weight loss – can mimic more common conditions, diagnosis is often delayed.

Christine said she still thinks about the moment her husband Robert came home one evening and sank onto the sofa. He was pale, weary and didn't look like himself.

"You need to go back to the doctor," she told him. What neither of them knew was that the tiredness, the indigestion, the weight loss and the shortness of breath that had been quietly building for months were signs of one of the rarest and most aggressive cancers there is.

Robert, a sheep farmer from Bushmills, died on August 9, 2024 from pulmonary artery sarcoma, a cancer so rare that many doctors will never encounter it in their careers. He was 53. He would have turned 55 this year.

Christine, who farmed alongside Robert for decades, is sharing his story because she wants people in Northern Ireland to know that sarcoma exists and that earlier awareness might make a difference for someone else.

Robert's symptoms began quietly in the autumn of 2023. When the couple went on holiday that September, Christine noticed his clothes were looser. He admitted he had lost a stone in weight.

By late September, he was suffering from indigestion every single night. He developed pain in his right shoulder and began struggling for breath so badly that after walking up a slope in the fields one day, he had to hang over a gate to recover.

When he finally visited his GP in December 2023, an ECG came back clear, and he was given peppermint capsules for indigestion, with the instruction to return if there was no improvement.

Robert continued to deteriorate. By February 2024, he was coming home early and going to bed, looking pale and exhausted. His hair was becoming patchy. Christine urged him back to the doctor.

After his second visit to a GP, a referral for an abdominal ultrasound followed, which was upgraded to a CT scan by a practice GP, with everyone assuming a gastric problem. This CT scan was thought to relate to possible gallstones.

When the GP called three days later, the news was alarming – lesions and fluid had been found in his lungs. By the end of April, Robert had been admitted to the hospital with a large saddle clot. He then developed pneumonia. Antibiotics helped, and he came home after twelve days.

On May 31, 2024, following a PET scan at Belfast City Hospital, Robert was told he had pulmonary artery sarcoma. It was inoperable, would not respond to chemotherapy and was incurable. Within weeks, the cancer had doubled in size. Robert was given five weeks to live.

"I wish Robert had been given palliative care from the moment of diagnosis," Christine said. "When the medication finally came, it made him feel so much better. Those weeks at home mattered enormously."

Robert spent his final weeks at home, sleeping downstairs, his oxygen dependency increasing. In late July, he was taken into coronary care.

In the first week of August, with what Christine describes as the last of his strength, he watched the dispersal sale of their flock of sheep. Robert and his stepfather, Samuel Simpson, had built up the Ballyhivistock Texel flock since 1991 and it become known and respected across the pedigree farming community. It was, Christine said, his life's work.

Robert died on Friday, August 9, 2024, with his family around him.

"What bugs me is the lack of knowledge about this disease," Christine said. "He was 53. It was so aggressive. He never had a chance.

"Sometimes if you hear hoofbeats, it’s zebras, not horses. If his symptoms had been recognised earlier, maybe he could have lived longer.

"The medical care he received from his GPs and hospital medical staff was compassionate. I want to tell Robert's story because I want to raise awareness. I don't want another family to go through this without knowing what sarcoma is."

Sarcoma UK funds research into better treatments and earlier diagnosis and provides support for patients and families affected by the disease.

Sarcoma UK’s Support Line Manager Helen Stradling said: "Robert's story is heartbreaking, and we admire Christine's courage in sharing it so openly.

"Pulmonary artery sarcoma is extremely rare, and the reality is that many GPs will never see a case in their entire career, which makes awareness all the more vital.

"As we mark Sarcoma Awareness Month, Robert's journey illustrates so painfully something we hear time and again from sarcoma families - the symptoms are there, but because they so closely resemble more common conditions, the pieces don't get put together quickly enough.

"We cannot always change that, but we can make sure that more people, both in the medical community and the wider public, have heard the word sarcoma and know it exists.

"Christine wants Robert's story to make a difference for someone else. We want that too. If even one person in Northern Ireland reads this and pushes for earlier answers if symptoms are not resolving, then Robert's legacy will already have begun to save lives."