Ovarian cancer: Rotorua mum, daughter with BRCA1 mutation given terminal diagnoses, sister opts for preventative surgeries

Jennifer Drysdale and her daughter Melissa are dying. They have terminal ovarian cancer as a result of a genetic mutation - BRCA1 - that increases the chance of developing ovarian and breast cancer. Jennifer’s other daughter, Amanda Howard, also carries the gene mutation and is having her breasts, ovaries, uterus and fallopian tubes removed as a preventative measure. But for Melissa and Jennifer, it is too late. They don’t know how long they have left, but want other women to be aware of the mutation so they can avoid the same fate. Megan Wilson tells their stories.

The hardest part about having terminal cancer for Melissa Drysdale is the prospect of missing out on her children’s birthdays and meeting future grandchildren.

“That’s what hurts the most.”

But she’s not alone. Her mother Jennifer Drysdale faces the same prospect. And Melissa’s sister - Jennifer’s daughter - Amanda Howard is taking drastic action to try to avoid the same future.

Melissa and Jennifer were diagnosed with ovarian cancer eight months apart. The diagnoses are terminal, but they are undergoing treatment in the hope of extending their lives.

Amanda is having her ovaries, fallopian tubes and uterus removed next month and a mastectomy later in the year.

Sitting in the living room of Melissa’s Rotorua home, Melissa, 38, Amanda, 48, and Jennifer, 70, say they have all tested positive for the BRCA1 genetic mutation.

It is the same mutation that prompted actress Angelina Jolie to have her breasts and ovaries removed as a preventative measure.

The Cancer Control Agency says everyone carries two BRCA genes - BRCA1 and BRCA2.

These genes produced tumour suppressor proteins that repair other genes. If this process is not working properly, cancer can develop.

People with a BRCA mutation are about five times more likely to get breast cancer and 10 to 30 times more likely to develop ovarian cancer.

Like Jolie, whose mother and grandmother died from ovarian cancer, many women found to have the mutation choose to reduce the threat of cancer with surgery - Amanda included.

Amanda Howard (left) is having preventative surgeries for breast and ovarian cancer while her sister Melissa Drysdale and mother Jennifer Drysdale (right) have terminal ovarian cancer. Photo / Andrew Warner

Melissa told the Rotorua Daily Post Weekend she was diagnosed with ovarian cancer in June.

She had steadily become “really short of breath” over three days. Her GP sent her for blood tests and believed she was fine, but another doctor advised her to go to hospital.

At Rotorua Hospital, an x-ray revealed nine litres of fluid in her lungs. After testing the fluid, doctors told her she had cancer. It was found in her abdomen and pelvis.

She found out she had the BRCA1 mutation after a genetic test in August. Jenny and Amanda later also tested positive.

In hindsight, Melissa said she had “slow, gradual symptoms”, including an upset stomach and bloating, which she had put down to stress.

“I always had an inner knowing that … some time through my life I was actually going to get cancer,” Melissa said.

“But I didn’t actually know it was going to happen this young.”

Melissa Drysdale, 38, (left) and her mother Jennifer Drysdale have been diagnosed with terminal ovarian cancer. Photo / Andrew Warner

Melissa said she went “hard and fast” with chemotherapy and had a hysterectomy in September.

In November, she discovered chemotherapy was not working.

Having run out of publicly funded options, she started taking Keytruda and Avastin six weeks ago and was quoted $140,000 for 12 months.

When Jennifer was diagnosed two months ago, Melissa was heartbroken.

Jennifer said her symptoms included bowel trouble, feeling sick and anxious and a bloated stomach.

“By the time I actually got a colonoscopy, an urgent scan was ordered, and [I had] grade four ovarian cancer.

“Surgery is not an option.”

Initially, she did not want chemotherapy “because I’d seen how much Melissa had suffered”.

Told she would not be alive at Christmas without it, she decided she wanted to live to help Melissa.

Jennifer has been responding positively to chemotherapy.

“My biggest thing was I wanted Melissa to get well. I’m 70 years of age and I’ve had my life.

Amanda, an oncology nurse visiting from Australia, said she was grateful for the chance to have preventative surgery, but felt “guilty” her mother and younger sister could not.

“It just didn’t seem fair,” she said through tears.

“It’s really hard not being here for Mum and Melissa.”

Jennifer said Amanda’s decision to have surgery was “very brave” but felt “sad she’s got to go through it”.

Jennifer Drysdale (right) initially said she did not want to have treatment after seeing how her daughter Melissa (left) had suffered. Photo / Andrew Warner

Jennifer and Melissa said they felt “at peace” about their diagnoses, but the reality of a shortened life still upsets Melissa, who has three children aged 17, 16 and nine.

“It’s the missing out on my children’s birthdays, it’s missing out on them having children themselves, and that’s what hurts the most,” she said through tears.

“My children are my driving force. I want to be here as long as I can to be with them and my family.”

She did not want to find out how long she was expected to live, but she knew it was “not a lot”.

“I’m just really accepting of my journey. I just hope I can prevent [that] for other people.

“There has to be a purpose in me experiencing this. I don’t want it to just be for nothing.”

Melissa wanted to pass her knowledge about the BRCA1 mutation to her children so they could make informed choices.

She said anyone could go to their GP and request a genetic test, especially if they had knowledge of cancer in their family.

Information from charity Cure Our Ovarian Cancer said 42 per cent of women diagnosed via the emergency department died within a year, compared to 17 per cent diagnosed via their GP, showing the importance of an early diagnosis.

Te Aho o Te Kahu Cancer Control Agency clinical director Dr Elizabeth Dennett said 260 people were diagnosed with ovarian cancer, on average, each year, with about 170 deaths annually.

The five-year survival rate was about 40 per cent.

Dennett said BRCA gene mutations were passed between generations. An individual was more likely to carry it if they had a family history of breast or ovarian cancer or were diagnosed with cancer at a young age.

Dennett said people may want to request a test for the mutation if they developed ovarian or breast cancer or had a family history.

Others reasons could be several close family members having ovarian and breast cancer or a close family member testing positive for a BRCA mutation.

Those concerned should speak to their doctor about getting tested, she said.

She said having preventative surgeries was a “huge decision”, but evidence from medical trials suggested this could prevent someone with these harmful genes from developing breast or ovarian cancer.

About ovarian cancer

• Symptoms may include: An increase in tummy size or bloating, abdominal, pelvic or back pain, increased or more urgent urination, bowel habit changes, eating less and feeling more full, fatigue, indigestion, painful intercourse, abnormal bleeding from the vagina, unexplained weight change.
• Although these symptoms are usually caused by conditions other than cancer, if any last for two weeks or longer (particularly if the symptoms are new, unusual or getting worse), get them checked as soon as possible.
• Risk factors include: Being older, never being pregnant or having a first child after age 35, starting a period before 12, menopause after 55, use of hormone therapy after menopause, obesity, family history of ovarian cancer or personal history of breast cancer.
• Having one or more risk factor does not mean you will develop ovarian cancer. Even those with no risk factors can develop ovarian cancer.

Source: Te Aho o Te Kahu Cancer Control Agency.