It was three years ago when Letitia Linke felt a lump in her stomach.
Her doctor thought it was a hernia and referred the then 34 year old mother of two to a reconstructive surgeon to repair. The surgeon recommended she get an MRI first – to assess the lump and the separation in her abdomen following her two pregnancies.
“It showed I had very bad endometriosis so before the surgeon would do anything – he recommended I see a gynaecologist,” Linke explains.
Which is how she ended having surgery to remove the endometriosis – and having her ovaries biopsied in the process.
“I got a phone-call the next day asking me to come in and see her straight away,” Linke recalls. ” I thought something mustn’t be right because why couldn’t it wait until my scheduled appointment a few days later?”
Something wasn’t right: Linke had ovarian cancer.
“The next week I saw a gynaecological oncologist who gave me a hysterectomy and cut out what we thoughts were endometriosis lumps. If the lumps weren’t cancer I wouldn’t have need chemotherapy,” she says.
They were cancer tumours in her abdominal wall so she has been undergoing chemotherapy ever since. At one point she underwent five weeks of having radiotherapy five days a week.
Linke, who lives in Maitland South Australia with her husband and two sons, has to travel an hour and a half to Adelaide for treatment so often spends this time separated form her family.
She is coming up to three years since her diagnosis, but has had a recurrence in the interim.
“It was a shock but I had prepared myself for it because I know it comes back easily,” she says.
It required another operation with a “pretty nasty and long recovery” due, in part, to a wound that wouldn’t heal which is typical in a patient who has had chemotherapy.
“The survival rate to 5 years with ovarian cancer is pretty low so I feel lucky,” she says. “I wasn’t told how long I had to live. I didn’t want to know. I just wanted to go along with the treatment a day at a time.”
Linke doesn’t have a family history of ovarian cancer and nor does she carry the BRCA gene.
At age 34 she wasn’t in a high risk age category and having just shed 30 kilograms she was feeling fit and healthy. Her only “symptoms” were some back pain and changed bowel habits.
One of the cruelties of this deadly disease is that, generally, by the time someone develops symptoms it is too late.
“When people become aware of symptoms it has often spread to a point where survival rates are significantly decreased,” Ovarian Cancer Research Foundation CEO Lucinda Nolan says. “For us, awareness of symptoms won’t save lives. The only thing that will save lives is early detection.”
— OCRF Australia (@ocrfaustralia) April 11, 2017
Ovarian cancer currently claims over 125,000 lives worldwide every year. There is no screening test and there are limited therapeutic options which means less than 25% of patients diagnosed will survive beyond 5 years.
This is why developing and implementing an early detection test is the foundations’s core objective.
Research is the only way this will be developed and because it receives little government funding the OCRF relies heavily on the generosity of corporates and community.
Critical to progress is the OCRF’s White Shirt Campaign with fashion label Witchery. The campaign has resulted in over $9,449,000 being donated to the OCRF since 2009.
Each year, for the past 9 years, a collection of seven women’s shirts and one men’s shirt have been available at Witchery for purchase for the duration of the campaign. For each white shirt sold during the campaign, Witchery donates everything except GST to the OCRF.
“We received $1.6 million last year from Witchery which is just incredible,” Nolan says. “We rely quite heavily on that to invest in the best research.”
The OCRF has just received more research grant submissions than ever before. The more money is that raised, the more of those grants can be awarded.
“The research grants this year are pretty exciting and take us one step closer,” Nolan says. “Some are looking at early events in cancer formation, some are identifying bio markers that are detectable in early stages and others are looking at the best way to beat chemo resistance.”
It is a small field but Nolan says Australia and New Zealand boast some of the best scientific minds. She is confident and hopeful that they will help deliver “a significant breakthrough” for ovarian cancer.
“Over the past 10 years other forms of cancer have had major breakthroughs. Unfortunately we haven’t. We remain the most lethal of gynaecological diseases and cancer.”
The White Shirt Campaign will conclude on World Ovarian Cancer Day on 8 May 2017.