Amanda Niebergall started 2020 with a big party, celebrating her 32nd birthday with friends and family.
The Regina woman then delivered a keynote speech at the Summit to Eliminate Cervical Cancer in Toronto, celebrating more than a year cancer-free.
“I came back and everything was going quite swimmingly, I thought, for this year and then my dad was diagnosed at the end of January, beginning of February,” she said.
Her 65-year-old father, Glenn, was diagnosed with neck and throat cancer. Around that time, Niebergall’s recent scans came back, showing what she called “some weirdness.”
“I wanted to pursue it further so I really pushed to the ministry to get my PET scan done and it showed my cancer had also come back,” she said.
The cervical cancer had metastasized in her neck and lymphnodes.
“If you feel something is wrong, push and get those tests. If you need a second opinion, get a second opinion.”
With their diagnoses so close together, Niebergall and her father started chemo at the Allan Blair Cancer Centre a day apart — the same week Saskatchewan imposed public health measures to stop the spread of the novel coronavirus.
Since hospital visitors were no longer allowed, Niebergall decided to move in with her dad so she could help him while self-isolating together.
“It’s nice, I’ve told my dad now I’m never leaving — this is just our home, we live together forever now,” she said, laughing.
The pair had one scheduled father-daughter chemo day during Glenn’s intensive seven-week treatment, which ended April 27.
Amanda Fights Back
Even with family support, Niebergall said she’s felt isolated during her second fight against cervical cancer.
“It’s more of an alone experience this time than last time, which I’d say was more of a group experience. I always had people with me; I always had supports,” she said.
Niebergall said her current treatment plan is also different, because there isn’t a protocol for metastasized cervical cancer in the neck.
“I get six chemos, and if it doesn’t work I go to trial land,” she said.
The 32-year-old is not focusing on the latter, adding most trials have been suspended or put on a temporary hold due to COVID-19.
Instead, Niebergall created an Instagram account, Amanda Fights Back, to share her story publicly for the first time.
“Online has turned out to be a great source of comfort. You can find people and you can connect with people,” she said.
Getting her first diagnosis had been a long and painful process.
Niebergall said it wasn’t until she felt severe back pain that her symptoms were taken seriously. She ended up in the emergency room and doctors found a 6.4-centimetre tumour blocking her kidneys.
“I think from being really young and just not being taken very seriously, I had a lot of misdiagnoses. A lot of prescriptions for birth control and pain pills and just kind of sweeping it under the rug,” she said.
The then-30-year-old went through 33 rounds of internal and external radiation. She wore the same outfit throughout treatment, which she later burned.
When she found out she’d have to undergo 18 days of chemo, Niebergall wanted to do something else. That’s when she read a post about a woman who wore her wedding dress to her final chemo day.
“Then I thought, 18 different costumes is a lot of fun and there’s a lot of different ideas,” she said.
The costumes ranged from her stepfather’s 1960s Boy Scout costume, to a unicorn and ’80s theme.
“It’s a way to get rid of the scariness. So instead of dreading chemo, I’m like, ‘what am I going to wear? What can I do? How ridiculous can I make it this week?,’” she said.
Niebergall is also continuing her work with the Canadian Partnership Against Cancer on a national action plan to eliminate the disease within the next 10 years.
“It focuses on early screening and detection, making sure you get in and get your pap tests,” she said.
“If you feel something is wrong, push and get those tests, if you need a second opinion, get a second opinion.”
As a patient advocate, Niebergall is working with healthcare providers to create a standardized approach, and ensure no one is left behind.
She said the action plan was scheduled to launch in May, but due to COVID-19 has been pushed back to the fall.