Rob’s story: Shedding some light on a rare cancer

Rob was busy enjoying an active retirement with his wife Pam when he noticed some lumps appearing on his scalp in early 2022. He’d always lived a fit and healthy lifestyle, so Rob didn’t think too much of it. But he decided to ask his doctor about it during a routine check-up.   

At first, his doctor dismissed the lumps. But as they grew larger over time, his doctor suggested that Rob speak to a dermatologist, who took a biopsy.   

Soon after, Rob received the call telling him that he’d been diagnosed with angiosarcoma, a rare cancer that forms in the lining of blood and lymph vessels. He was shocked.   

Now, Rob’s sharing his story to raise awareness of soft tissue sarcoma and help others diagnosed with the disease.   

Starting treatment: Rob’s journey into the unknown  

Rob started treatment immediately, starting with a five-hour operation on his scalp, followed by radiation therapy. He remembers being nervous about what treatment would entail.  

“I asked my oncologist, ‘What if this doesn’t work?’ He said, ‘Don’t think about that.’ I learnt it’s best not to dwell on the negatives.”  

Although Rob experienced some common side effects from the radiation therapy – including tiredness, a dry mouth, sore throat, and swollen and itchy eyes – his doctors were pleased with his progress.  

“At the end of each radiation therapy session, you start thinking ‘Can I go through this again?’,” he says.   

“But you’ve got to take everybody at their word. I remember just hoping I could beat it because I didn’t want to leave my wife alone. I had weddings coming up and great grandchildren to spend time with.”   

“If I can make life easier for one other person, I’d be happy.”  

Around 1,600 Australians are diagnosed with a soft tissue sarcoma each year, and it’s more likely to be found in people aged 55 or over. Being diagnosed with a rare cancer can be isolating, and Rob struggled to get the information he needed.  

“When you look on Google, it doesn’t give you much,” he recalls. “During my journey, many medical people knew little to nothing about it – so I wanted to share my experience for the benefit of others.”  

There are more than 70 types of soft tissue sarcoma, each named after the type of cell where the cancer started to grow. Although it doesn’t usually have many symptoms in the early stages, some people may develop a painless lump. If the lump gets bigger, is the size of a golf ball or larger, or is painful or tender, you should see your doctor.   

Living life to the fullest   

When Rob reflects on what’s happened, he has mixed feelings: shock at being diagnosed with cancer while otherwise healthy, lucky that his cancer was caught early through an opportune visit to the dermatologist, and extreme gratitude to the doctors and nurses who’ve helped him through.  

When Rob was diagnosed back in 2022, doctors said that he had six months to live. But two years later, he’s still here. 

Rob recently learned that his cancer has returned, with further treatment no longer an option. 

Regardless, Rob is focused on living his life to the fullest and spending time with his children, grandchildren, and great-grandchildren.  

We thank Rob for sharing his story to raise awareness of this rare cancer, because it can make a real difference to others going through similar experiences.