Having survived cancers of the mouth, three Hibiscus Coast women want to spread the word about the support that’s out there for others who receive a similar diagnosis – and the connection with the human papillomavirus (HPV) vaccination.
They do so now, as it’s the second annual World Head and Neck Cancer Day on July 27.
The three friends, Maureen Jansen, Sheila Brown and Mary Pringle, range in age from 45 to 72. All of them had squamous cell carcinomas, which were not HPV positive. There are a lot of shared experiences in their tales of a shock diagnosis, followed by biopsy, scans, operations and treatment including radial free forearm flap surgery, where tissue from the forearm is used to reconstruct the affected part of the mouth.
For all three women, the first sign that something was wrong was a mouth ulcer that did not heal after a couple of weeks. Sheila, 45, is an instrument technician for Watercare. She will always be grateful to a co-worker who suggested she should have this particular ulcer checked by a doctor.
For accountant Mary, who describes herself as “the autoimmune queen”, ulcers were common as a result of celiac disease and Hashimoto’s thyroiditis. Her GP spotted that this one was different, and a few days later she had the biopsy that resulted in her diagnosis.
All speak highly of the health professionals who helped them along the way, although the multi-disciplinary meeting felt a bit strange. “You have a room full of doctors and specialists in front of you and an image of your mouth on a screen behind your head,” Mary says. “They ask you questions and then devise a full plan for you – all in the one day. I got through it by pretending I was interviewing them.”
Seventy-two year old Maureen has been through a range of operations for cancers in her tongue and cheek but has been cancer-free for five years.
Her passion is to help others, including the younger generation – in part through a Facebook support group that she helped to form in 2016. Currently the group has 461 members from all over the world.
Maureen says a generation ago most cancers in this part of the body were caused by smoking and drinking and mainly affected older men. “In the last couple of decades there have been more HPV related head and neck cancers,” Maureen says. “These are caused by sexual contact, usually oral sex, and affect men more than women. Eighty percent of the population is exposed to the HPV virus. The immune system normally destroys the virus but for an unfortunate few it hangs around for years, only to cause cancer in early middle age or later.”
Maureen says this is one reason why the HPV vaccination, which was initially provided to girls in relation to cervical cancer, has been offered to boys since 2017.
“HPV related head and neck cancers respond better to treatment than the non-HPV ones but they can be very nasty or even deadly so I urge people to get their pre-teen children vaccinated,” Maureen says.
“Another key thing is early detection.”
Info: Look for HNCSupport Aotearoa on Facebook.