‘I hope my story as a sarcoma patient can be a lesson for healthcare providers’

It all started with a stain on her shirt in October 2023. As she rubbed it in an attempt to get rid of the stain, Eva felt a lump close to her breast. “I must have bumped into something at work,” she brushed it off at first. But when she still felt the same lump several weeks later, she reached out to her GP. Her care journey had started…

Good news?

The GP referred her to a nearby general hospital, which has a licensed breast clinic. Her breast’s ultrasound and MRI scan were inconclusive, so a puncture was performed. At that time, the specialists believed it was a sarcoma-like growth in a phyllodes tumor, although they were not completely sure. They did label the tumor as benign. So good news for Eva, it seemed for a while.

“On 20 November, they removed the lump via breast-conserving surgery to get a detailed look at exactly what they were dealing with,” she recalls. “In early December, I got the results back: it turned out to be cancer…”

Second surgery

The regional hospital referred Eva to a University Hospital, but it was several hours’ drive from her home, and she also had to wait two weeks to get a first appointment. So, she started calling around herself and was able to secure an earlier appointment at a University Hospital closer to home. She had to undergo another series of tests, and in February Eva had surgery a second time, during which they removed her entire breast and part of her diaphragm.

“With the advantage of hindsight, if they had diagnosed me correctly sooner, I would not have lost so much time and that first breast-conserving surgery would not have been necessary,” Eva said. However, she does not blame anyone. “Sarcomas are very rare. And as my attending physician at the University Hospital said: healthcare professional or not, you can only diagnose that which you know.”

‘I don’t blame anyone. Sarcomas are very rare. And you cannot diagnose that which you don’t know.’

Still, she insists on sharing her story with others. “Why? I just hope others can learn from it,” Eva said. “Both ordinary people and healthcare providers.”

‘Be open about your doubts’

“My main message to people like me: if you have doubts, don’t be afraid to express them to your doctor and care team. They are the medical experts, but it’s your body. So, you always have the right to express your opinion.”

“I just followed, followed and followed, even though I had already read several scientific studies and had my doubts about the care provided at the regional hospital. If I could do it again, I would have asked for a second opinion right away.”

Message for healthcare providers

When you turn it around, this piece of advice is just as valid, Eva believes. “If you are a doctor and fail to recognize a rare cancer like a sarcoma, it’s not your fault. But I think you should ask for a second opinion yourself,” she says. “And if a patient expresses doubts, please don’t dismiss them but take them seriously.”

Eva concludes her story by asking for greater attention to be paid to surrounding care and guidance. “The first hospital I ended up at did have a breast clinic, but they didn’t assign me a breast nurse. Even though I did ask for one,” she cites as an example.

“Also, talking to a psychologist could have helped me a lot at that point, but I didn’t get access to that either. Providing proper support services is increasingly becoming a priority for our healthcare system, but it is certainly not common everywhere. That’s why we all need to keep pushing for it.”