Rob’s Shedding some light on rare cancer

Cancer Council NSW

Rob was busy enjoying an active retirement with his wife Pam when he noticed some lumps appearing on his scalp in early 2022. As he’d always lived a fit and healthy lifestyle, Rob didn’t think too much of it, but decided to ask his doctor 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 his dermatologist, who took a biopsy.

When 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 in shock.

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 1600 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.

Fortunately for Rob, after an additional course of radiation therapy, his oncologist gave him the good news – he was in remission.

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.

Now, Rob’s focused on living life to the fullest: playing golf once a week, regular beach swims at Wollongong beach, and spending time with his children, grandchildren, and great-grandchildren.

As for the future?

“Now the journey continues. Will I get to three years or beyond? Only time will tell. Suffice for now to enjoy life as it is, with my family and friends.”

If you need to talk about cancer, call Cancer Council on 13 11 20 or find resources on Cancer Resource Hub.

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