Mum’s ‘weird’ discovery breastfeeding
AFTER a routine visit to her GP, Lisa Tappin's doctor told her the last thing she ever expected to hear: breast cancer.
Crippled with fear, she admits: "I went and organised a will."
Lisa's cancer diagnosis turned her world upside down but it came as the Federal Government announced that the Therapeutic Goods Administration is now approving inhibitor drugs like Kisqali.
It wasn't available on the Pharmaceutical Benefits Scheme (PBS) but Lisa qualified for special access.
Lisa is one of three women with metastatic cancer on the Kisqali drug protocol who spoke with news.com.au about living with advanced cancer.
Kisqali inhibits something in the cancer cell cycle to halt growth.
It was two years ago when Lisa, then aged 43, went to see her GP.
She had been feeling unwell for months, with nerve pain in her back and leg, and then a terrible and constant gastro upset.
Her doctor sent her for an abdominal scan.
When the doctor phoned Lisa to say the results were back, she was told to bring a family member.
The warning bells went off for Lisa.
The doctor told her the scan had picked up three secondary tumours on Lisa's liver and something around the bowel area, which the doctor thought might be bowel cancer.
A second series of scans identified cancer in her right breast that had spread into her lymph nodes.
Mammograms and a breast biopsy revealed it was definitely breast cancer, and a colonoscopy was clear.
It was the last thing she expected.
At the time Lisa had believed breast cancer was genetic, and her family had no history of it, or that it was something that affected women over the age of 50.
Her oncologist suggested Kisqali, which was not on the PBS, but she qualified for compassionate access.
As with other patients who have oestrogen positive breast cancer, Lisa also took a hormone blocking tablet to suppress her ovaries boosting the cancer growth.
Eventually, she agreed to have her ovaries removed.
"I am just fortunate I haven't been particularly desperate to have children, and at my age I was already agreeing I was past that," she told news.com.au.
"I was mentally in a good place, but it was a difficult conversation with my parents about my wishes at death.
"I went and organised a will.
"You think you are going to die tomorrow, it's just that fear which is crippling.
"The first four months I was what I would describe a mess.
"But I'm OK now, it's two years on."
Lisa was lucky to have many supportive people around her, "a whole bunch of girlfriends I called into duty".
One friend accompanies her on hospital trips, another friend meets up with Lisa every few weeks for coffee, and she goes on mini-breaks around Australia.
She had to give up her job as a payroll officer but feels well and miles more positive than two years ago when, she said, "I would never have been able to talk about it, back then."
"I have come to terms with things now," she said.
"I'm just trying to enjoy life and spend time with family and friends.
"All drugs have side effects but Kisqali is much better at leaving me in reasonable health and I am so grateful … it has given me as much quality of life as possible for as long as possible."
With her new cat, Lulu, a support pension out of her superannuation, and her parents now adjusting to her diagnosis, Lisa feels positive.
"The big unknown is how many years I have left," she said.
"I have chemo up my sleeve for down the track when eventually Kisqali will stop working. My body will get used to it.
"By then they might have something else."
Shannon Smith, 35, is a young mother of two children aged under four years.
She was working as a nanny in Perth when her baby daughter was just three-and-a-half months old.
Shannon was breastfeeding her daughter when she felt a lump in her breast that she assumed was a blocked milk duct.
She had dealt with them before and tried the usual solution of massaging it away.
When it hadn't gone five days later, she went to her GP, who sent her off for an ultrasound and a biopsy.
Preliminary results showed breast cancer, but it was a breast surgeon who told her she needed to stop breastfeeding and get a bone scan because the lump was large.
Shannon had 36 hours to wean her baby, and in deep shock, she couldn't eat or sleep.
The bone scan revealed cancer spots on her sternum and spine.
Shannon remembered during her second pregnancy she had felt "weirdness in my chest" when breathing deeply but had put it down to pregnancy.
It was October, 2018, and Shannon's first oncologist told her aggressive chemotherapy was the ideal treatment.
She started the chemo, her husband briefly stopped working, her mother was sleeping in the lounge room, her sister, mother-in-law and friends were all helping out.
Shannon was feeling overwhelmed.
"At the very start, I thought, 'Wow, I probably have got a year to live'," she said
She went and saw another oncologist who told her her breast cancer was the oestrogen-based type, and she needed to be shut down and put into menopause with tablets.
Finally, she found her way to the rooms of Professor Arlene Chan, a world-renowned Perth breast cancer oncologist who prescribed Kisqali.
Like all patients on the drug, Shannon takes three tablets a day for three weeks, then has one week off.
She gets an occasional headache and a "little queasy" if she doesn't take her morning tablet with food.
Her scans have shown the positive outcomes, shrinking tumours, stabilisation of her condition enough to have surgery.
Doctors removed her lymph nodes, which all came back positive for cancer, and her breasts and then reconstructed them with her own tissue.
The process had a longer recovery time than inserting implants but a better result in the long term.
"For the first couple of weeks, I was hunched over, but I'm much better now," Shannon said.
"My scans showed … two spots on my sternum had grown a little bit.
"I had to go off medication for about six weeks during surgery and I have had radiation.
"But now I'm back on (Kisqali) and the spots are shrinking."
Shannon said her diagnosis was "out of the blue", and genetic testing revealed she had no hereditary predilection for breast cancer.
"I was just a regular person," she said, "it's been hard to get my head around."
She says now she sees a psychologist who helps her "focusing a lot on living".
"I definitely have bad days," she said.
"When I look at my kids and burst into tears because it is just so devastating.
"I keep busy. I don't dwell on the past, and I can't predict the future."
Shannon said she could only bring herself to tell her best friend about her diagnosis, who then told her other friends.
"I just couldn't do it," she said.
"Everyone was so shocked. No-one expected it … we're young."
Shannon said Prof Chan's knowledge of the oestrogen inhibitor treatment and the need for quick action came with a compassionate nature.
"She was very direct, but she also has a caring side," Shannon said.
"She said it was about keeping the disease at bay for many, many years so I can see my kids grow up.
"People with metastatic cancer can live 10 to 15 years."
The Federal Government has just announced that the Therapeutic Goods Administration is now approving Kisqali for use in younger women with breast cancer.
Advanced breast cancer in younger women is more aggressive and has a worse outcome compared with older women.
More than 95 per cent of Australians diagnosed with early breast cancer will live beyond five years compared with only 32 per cent of those with metastatic breast cancer.
But inhibitor drugs like Kisqali are game changers says Queensland oncologist Kate Cuff.
Dr Cuff said the benefits had not only been keeping advance stage breast cancer patients alive longer but also their comparative wellness and quality of life on the drug.
"It is obviously devastating initially," she said, "they are in complete shock.
"(Metastatic cancer) is still incurable and this is not a miracle cure.
"But comparing it to chemo, it is very tolerable.
"It has been one of the biggest game changers for oestrogen positive breast cancer in the last five to 10 years.
"I say to my patients you are going to feel well on this treatment.
"It is delaying chemo treatment and gives them more time and a better quality of life.
"Most people start to feel almost normal again.
"They start to feel better and gradually become more and more optimistic."
Dr Cuff said while Kisqali was revolutionary for treating oestrogen positive breast cancer, which represents 70 per cent of breast cancers, there were more "drugs in the works".
"There's so much research into breast cancer," she said.
"It's a really active area of interest.
"What's next? The ideal treatment beyond that. We really want to continue that benefit."