I thought I had an insect bite; the GP said it was a cyst; the surgeon talked amputation

Cancer’s prevalence means almost everyone will be affected by the disease at some time. However, relatively few have heard of sarcoma – a cancer which develops in the soft, supporting tissues of the body.

This rare cancer, which makes up just 1 per cent of invasive cancers, can be difficult to detect but is also very aggressive.

"Soft-tissue sarcomas are cancers which develop from cells in the soft, supporting tissues of your body," says Kevin O'Hagan, cancer prevention manager with the Irish Cancer Society. "For example, your bone, muscle, cartilage and ligaments or in any of the other tissues that support, surround and protect the organs of your body. Soft-tissue sarcomas can also develop in your womb, stomach, skin and small bowel.

“Almost half of all soft-tissue sarcomas occur in limbs, especially the legs, but other common sites include the chest, stomach and pelvis. They may also occur in your head and neck, but this is less common. However, the signs and symptoms vary greatly and usually don’t cause any symptoms for a long time until they become larger and press on an organ, a nerve or muscle.”

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Niamh Holmes from Co Louth has first-hand experience of the stealth of a sarcoma, as what looked like an insect bite on her leg turned into something very sinister, which almost cost her a limb and her life.

“I first noticed a lump behind my right knee in about April 2015 and thought it was an insect bite as it was swollen and itchy,” she says. “But never really thought much about it as I didn’t have any other symptoms and there was no pain. However, a few weeks later, it had grown to the size of a golf ball and my mum persuaded me to go to the doctor.

“My GP thought it was a cyst and I was given knee support and told to come back in a few weeks. So I forgot about it again until September 2015 when a family member mentioned that my leg looked really swollen. I hadn’t really noticed it getting bigger as I was looking at it every day, but it made me think that I should get it checked out again.”

The 26-year-old pre-school teacher went back to her doctor in October 2015 and was referred firstly for an MRI and then to a surgeon who would “deal with the condition”.

“In early November I met with my surgeon who arranged for me to have a biopsy,” she recalls. “I didn’t worry too much as being only 24, I still believed I was too young for it to be anything other than a cyst – but as the time got closer to the biopsy, doubts started to creep in. I had the biopsy on November 25th, 2015 and two weeks later, I got called in to see my surgeon – and that’s when everything changed.”

The Dundalk woman was shocked to discover the seemingly innocent cyst on her leg was in fact cancer and although she was fortunate that it was caught early, she would need treatment and potentially life-altering surgery.

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“I was told that I would need radiation as the tumour was too close to my knee and that if he (the surgeon) went in, then he wouldn’t be able to save my leg and it would have to be amputated,” she says. “It was so hard to accept this had happened to me but I don’t think I really understood what was coming over the next few months.

“I would need 25 fractions of radiation, five days a week for five weeks and would also need chemotherapy. I was also referred on to have my eggs harvested as there was a chance I could become infertile from all the treatments.”

After a gruelling programme of radiotherapy and chemotherapy, punctuated by infections and complications, Niamh was ready for surgery and thankfully the treatment had worked and amputation was not necessary – instead she had a 14cm tumour removed from her right leg and in April 2016, she was discharged and started out on the road to recovery.

“I started to recover slowly at home, but as the weeks went by, I felt myself getting stronger and I am currently cancer-free for over a year,” she says. “I went back to work last September after nine months off and am now trying to return to normal. But although I’m alive and thankful for that, I also grieve for the life I am missing out on as I always have the weight of a possible cancer diagnosis in the future.

“But I am so lucky that my cancer was caught early and I would advise other people who have symptoms to follow their gut instincts and don’t be afraid to speak their mind. It’s important to get a second opinion if you feel you need it as sarcoma is a rare and aggressive cancer and most GP’s will only come across one case in their whole career so if you feel something isn’t right, get it checked.”

Kevin O'Hagan of the Irish Cancer Society agrees: "If anyone feels that they might be at risk, they should first talk to their family doctor about their concerns," he says. "Symptoms may be caused by other conditions but if cancerous, treatment will depend on the stage and grade, so early detection is always important."

THE FACTS
An average of 176 cases of soft-tissue sarcoma were diagnosed per year in Ireland from 1994 to 2012, representing just over 1 per cent of all invasive cancers. The cause of soft-tissue sarcomas is mostly unknown. But there are certain risk factors.

SOME SYMPTOMS MAY INCLUDE:
– Any lump, especially if it is increasing in size and bigger than 5cm (2 inches).
– Any lump that is painful and tender.
– Any lump that is deep in your body, and not just under your skin.
– Any lump that has come back after being surgically removed.
– A lung sarcoma might cause a cough and breathlessness.
– A sarcoma in your tummy (abdomen) might cause abdominal pain, vomiting and constipation.
– A sarcoma affecting your womb might cause bleeding from your vagina and pain in your lower tummy.

According to the National Cancer Registry Ireland, survival rate for all soft-tissue sarcomas combined was 75.6 per cent of one year post-diagnosis, three years was 61.1 per cent and five years was 56.5 per cent.