health

Two mums, two stories, two diagnoses and one life-threatening cancer.

Every 10 hours, one woman dies from ovarian cancer.

It’s the most lethal of all of the cancers, usually presents no symptoms, and by the time most women are diagnosed it is often too late.

An early detection test would save lives – thousands and thousands of lives – but does not exist yet. According to Lucinda Nolan, CEO of Ovarian Cancer Research Foundation, less than 25 per cent of women diagnosed with ovarian cancer survive beyond five years. If we had an early detection test, this would increase to 80 -100 per cent.

With less than two per cent of cancer research grants in the past two years being dedicated to ovarian cancer, the responsibility to make serious and considered change is on us. It’s time for us to open our wallets and our hearts and make change where change is due. If not for your conscience, then for women like Letitia and Vali.

Letitia’s story

Letitia. Image supplied.
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"It all happened so fast."

Those are the words of 37-year-old Letitia Linke from Maitland, South Australia, who has two boys and one aggressive, silent cancer. Three years ago, she was on a "health kick". She was eating well, working out with a personal trainer and had lost 30 kilograms. By her own admission, she was "feeling great". And then she discovered a little lump in her abdomen.

"I went to my doctor, who after a couple of visits, suspected a case of hernia. I was sent to specialist reconstructive surgeon, who ordered an MRI. They found what they thought was a severe case of endometriosis," Letitia tells Mamamia.

"I had a routine procedure to ‘clean up’ the endometriosis. Thankfully, while in surgery, the gynaecologist also performed a biopsy of my ovaries. That’s when they diagnosed me with ovarian cancer."

In describing the diagnosis as a "huge shock", Letitia recalls feeling confused above all else.

"I had never felt better. I didn’t have any of the fatigue associated with cancer. I had no family history and didn’t really have any symptoms, except perhaps a change in bowl movements, which I had put down to my new diet," she says.

A week later, she was undergoing a radical hysterectomy to remove her ovaries, uterus and part of her cervix. Since then, she has undergone chemotherapy, radiotherapy and multiple surgeries.

Letitia and her family. Image supplied.

"The first thing that went through my head was, 'would my boys have a mum?' But I am a very practical person, so although I did cry and feel scared, I took it one step at a time. The worst part is the initial diagnosis and then having to wait for pathology. Once I saw my doctor and got a treatment plan, began to feel a lot better.

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"My husband was absolutely devastated and took it worse than me. We discussed what and how to tell the boys. As they were only 7 and 8, we were very careful about how much we told them. Kids need honesty, but not scary facts or information overload. We also wanted to make sure they got they right information about my case directly from us (living in a small town it's sometimes hard to filter people talking) and to also assure them that we would do all we could to get through this together."

Today, Letitia has maintenance chemotherapy once a month. The trips back and forth for treatment can be exhausting, but she says her sons are coping "extremely well". After all, if she can tolerate her treatments, they shouldn't be something her two boys fear.

"There's no time to dwell on the bad. There is no choice. I remember coming home from chemo one night, vomiting the whole way home. When I got to the driveway, I pulled myself together and wiped away the tears. They don't need to see that. I've got to be strong for them.

"I don’t know if and when the cancer will return. I am just trying to live life as normal as I can."

Letitia is confident that if she had access to an early detection test, her experience with ovarian cancer would be incomparable to the one she's currently navigating.

"If mine had been detected earlier, I may not have had to go through as many surgeries, chemotherapy or radiotherapy. I wouldn’t have had to be away from my family for so long for continuing treatment."

Vali's story

Vali. Image supplied.

Vali was just 19 when she was first diagnosed with ovarian cancer. Much like Letitia, Vali's doctors also assumed it was Endometriosis and so the then-teenager underwent routine surgery to remove the endometriosis.

"I woke up from surgery with the news that that I had ovarian cancer. At 19 years of age, it was pretty shocking. Although I suffered from lower back pain, nausea, painful and irregular periods and had issues with my bowels, there was never any reason to think there was something else serious going on," she says.

Her left ovary was removed, and Vali was diagnosed with a type of ovarian cancer that was really "rare" - it was slow growing and not as aggressive. She didn't need chemo and her prognosis was good.

"Unfortunately, the cancer didn’t act out like the doctors thought it would and it made another appearance five years later. Again, they discovered it while I was having more surgery for endometriosis. They found 15 small tumours in my abdomen.

"This time, it was much harder to deal with. I suddenly began wondering what it was all going to mean. I was told that I would have major abdominal surgery and would need chemo this time around. I started worrying that I would lose my remaining ovary and the chance of having children. Luckily, my remaining ovary was cancer free and the doctors where able to remove it and basically freeze it for when I was ready to start a family," she says.

What followed was four months of grueling chemo which was so tough she lost about 26 kilograms. It took her another three months to recover from it, but she was eventually given the all clear.

Vali and her daughter. Image supplied.

"Finding my way back into a ‘normal’ life was difficult, I was surgically menopausal and had to deal with all that came as a result of that.

"Being single, meant that eventually I had to make my way back into the dating world with this huge question mark over my head. Would I be able to have a family and would it be a deal breaker? I dealt with that by being painfully honest. I am sure I told my now husband, Dean, on the first date."

After four years, Dean and Vali decided to try and have a baby. 17 IVF cycles and two surgeries later, Vali fell pregnant with twins.

"Our beautiful twin girls, Alexis and Kaia, now three and half where born via c-section in November 2013. Now that they are here, healthy and growing it is hard to remember how hard the journey to have them was. Unfortunately, when performing the c-section, the doctors found, yet, more cancer. Luckily, they were able to remove it there and then.

"Waking up in Intensive Care with the news of more cancer was not how imagined my first few days with my babies, but I was grateful that they found it then, otherwise it could have continued to grow “silently” for years. I just focused on getting back to the girls and was up and about after three days."

A year after her twin girls were born, Vali had an operation to ensure all the cancer was out. She's currently well, but admits ovarian cancer is a "constant worry" for her.

"The only way to truly know if my cancer has reoccurred is to have more surgery, which isn’t really feasible. So when I get sick and run down I always worry, has it come back?

"For women like me, with a history of reoccurring ovarian cancer, [an early detection test[ would reduce some of the anxiety and worry that we live with, because there would be a simple process to ensure that we were OK."

Monday, May 8 is World Ovarian Cancer Day

The Ovarian Cancer Research Foundation (OCRF) are making significant progress in developing this test but desperate need more funds to complete their research. They get no funding from the government and rely on financial support of the corporate sector and the broader community.

Please support OCRF and Witchery’s White Shirt Campaign. It raises much-needed research funds to support the OCRF’s mission to find an early detection test that could save the lives of thousands of women each year.

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