The summer holidays are for many, a favourite time of year. But for some, this holiday season is more special, or a bit different, than usual. Or both. In a Herald series, Our First Summer, we are profiling people who are celebrating their first summer with a change in their lives.

Summer, with the festive season sandwiched in the middle, is a time for giving.

A year ago it was Sheree Insley's friends, family and neighbours doing the giving, rallying after she was diagnosed with bowel cancer just before Christmas in 2016.

This summer, it's Insley doing the giving, as she works to raise awareness and support for those diagnosed with Lynch Syndrome, a hereditary condition that increases the risk of some cancers.


The Mangere Bridge mum-of-two has just been diagnosed with the syndrome.

She had surgery last year and doctors discovered her stage three tumour had loss of protein, a sign of Lynch Syndrome, but tests take place in Melbourne and it was six months before she was diagnosed.

Among the many challenges of her illness was the lack of support and information in New Zealand, Insley said.

"In New Zealand we don't have a very good support network. Over in the UK, in Australia ... they have support groups, awareness campaigns and Lynch Syndrome people are involved in medical conferences."

'I've got to look to the future'

She wants to change the New Zealand situation — especially for two precious people in her life.

"I've got to look to the future. I have two children and I'd like, if they get diagnosed with this, that they have the opportunity to have local support, rather than having to think they have to go overseas."

Insley does not yet know which parent she inherited the syndrome from. Children of those with Lynch Syndrome have a 50 per cent chance of also having the condition.

Sheree Insley was diagnosed with bowel cancer aged 39. She later found out she has the rare, genetic condition Lynch Syndrome, which increases the risk of bowel and other cancers. Photo / Greg Bowker
Sheree Insley was diagnosed with bowel cancer aged 39. She later found out she has the rare, genetic condition Lynch Syndrome, which increases the risk of bowel and other cancers. Photo / Greg Bowker

The 40-year-old also hoped to raise awareness about the syndrome. Between 3 and 5 per cent of Kiwis who have bowel cancer have Lynch Syndrome.

A warning sign for the syndrome was a big history of cancers in the family, especially bowel cancer, but also those affecting the uterus, ovaries and small bowel.

People should tell their GP and be vigilant of signs their body is not right, a message that was important for anyone, even those without a family history of cancer, she said.

One way to do this was to request colonoscopies from the age of 40.

She didn't want anyone else to go through what she had, Insley said.

"Having more public awareness about it means we can be more proactive, so [people] won't have to be in my shoes, having to go and get surgery and then chemotherapy and obviously the stress that entails."

She has set up an Everyday Heroes fundraiser, which can be found at, in aid of her efforts and spoken with Beat Bowel Cancer New Zealand about linking a Lynch Syndrome support group to their website.

"All cancers need attention and awareness but as for me and other 'Lynchies', I would like Lynch Syndrome in New Zealand to have more awareness and support ... we'd appreciate [donations]. Anything would help."

Her latest scan was clear, but she will need regular cancer screening for the rest of her life, and preventive surgery is also planned.

For now she's focused on the simple things — the joy in life and making it worth living.

Last summer she was booked for surgery and a family summer holiday was out of the question.

This year, the bags are packed for a trip to Napier.

"My message for 2018 is ... bring more love, joy, kindness and magic into what we have, as you never know what is around the corner."

What is Lynch Syndrome?

Lynch syndrome is a rare, inherited condition that increases your risk of developing bowel cancer and sometimes other cancers.

It is caused by an abnormality in one of four mismatch repair genes. These are the genes responsible for correcting mistakes that occur when cells divide.

Those with Lynch Syndrome account for about 3 per cent of all bowel cancer cases, as while the average Kiwi has a 6 per cent chance of developing bowel cancer by age 75, those with Lynch Syndrome has a 50 per cent chance of developing the cancer by age 70.

There is also a higher risk of uterine cancer (30 per cent v 2 per cent) and ovarian cancer (3 to 13 per cent v 2 per cent).

Genetic testing is available for families with this syndrome, with regular screening suggested for those affected.

Source: New Zealand Familial Cancer GI Service