After surgery, radiation and months of pain, a Winnipeg woman in the middle of battling a rare form of cancer says her doctor should have caught the disease months earlier.
"I have half a head missing, so it doesn't feel good. I have no hair, so I just feel like there's a part of me missing," said Rachael Sawka, 23, a criminology major at the University of Manitoba.
In January, Sawka visited her doctor at Seven Oaks Hospital after noticing a toonie-sized bump on the back of her neck.
Sawka said the doctor told her it was a cyst and arranged for a surgery appointment in April to have it removed.
In the weeks that followed, the bump began to grow and throb.
"It was so painful, I wasn't sleeping at night; I was on the couch. I kept going back because it hurt so much," she said.
The intensity of the pain increased over time. Sawka booked five or six followup appointments with her doctor in the months leading up to the surgery, she said.
She also visited the emergency room twice, including a visit to the Misericordia Health Centre, where an emergency physician ordered an ultrasound.
The results of the ultrasound done at the Misericordia on Feb. 5 were sent to Sawka's doctor at Seven Oaks Hospital with a recommendation that a needle biopsy be performed.
"An irregular mass is seen…. There appears to be some vascular flow…. Fine needle aspiration biopsy should be considered," the recommendation document to Sawka's doctor at Seven Oaks states.
Those recommendations were never followed, Sawka said.
'No one did anything'
She started to feel powerless.
"No one did anything," she said.
On April 4, Sawka went to Seven Oaks Hospital for what she was told would be cyst removal surgery.
"He cut me open and told me it was too big to take out," she said, adding the tumour was about the size of a softball by then and protruding about five centimetres from the back of her head.
"He sewed me up and kind of said, 'Go home,'" Sawka said. "I was like on the table, freaking out, like, 'What do you mean?'"
Sawka went home and got a call from the surgeon about a week later, she said.
"He phoned me on the phone and said, 'You have skin cancer. I'm referring you to CancerCare.' Click."
After that referral, everything changed.
"It's a whole different world; it's way better. Everything is organized, everyone's communicating," she said, adding oncologists and other medical professionals met with her immediately and frequently. She felt well cared for.
In May, Sawka began 25 rounds of radiation therapy, even though doctors were still investigating the type of cancer she had. The mass had nearly tripled in size since the surgeon cut into it in April, she said.
Doctors now believe the cancer is a rare form of tissue sarcoma.
Sawka had to receive five blood transfusions during the course of her radiation, because the tumour bled profusely on several occasions.
"I couldn't live with it. It was getting out of control … and it hurt," she said.
"It was like tissue, coming out of the back of my head. It looked like a brain coming out of the back of my head. It stunk, black, it was disgusting.… It was like dead flesh."
The radiation shrank the tumour enough to allow surgeons to remove it in July.
She woke up from the 10-hour surgery completely sapped of energy.
"I felt like I was half-dead," she said.
In the process of removing the tumour, surgeons also removed parts of Sawka's skull, skin and muscle tissue.
Surgeons transplanted muscle from her shoulder into her neck and grafted skin from her leg over the affected area.
What's to come
Sawka spent $8,000 on freezing her eggs in the lead-up to a six-month round of chemotherapy scheduled to start on Oct. 24.
Until then, she is left considering what life will look like afterward. Nerve and back pain could be the norm for the rest of her life; restricted head and neck mobility are already a reality.
She'll never be able to grow hair on the back of her head and neck again.
Mobility issues could limit what she will be able to do. She might have to quit playing ringette, a sport she loves.
She also wonders what could have been done differently.
"I feel like if they just would've taken that needle biopsy, it would've been way different. Things just would've been way better for me," she said through tears.
"I felt like there was just a lot of mistakes made, and it shouldn't have been like that."
Sawka said she has an excellent support network of family and friends who continue to help her through the ordeal.
"I don't even know how I lived through that. It was awful," she said. "I feel like I'll never be the same, but I'm alive, so that's what counts."
WRHA review underway
A spokesperson for the Winnipeg Regional Health Authority said the organization is reviewing Sawka's case and has connected with her to hear her concerns. The doctors involved will not be speaking about the case, a health authority spokesperson said.
"We're very sorry to hear about this patient's diagnosis. We take all concerns and allegations made regarding care experienced within the WRHA seriously," the spokesperson said in a statement. "We offer our support to her during the continuation of her care."
Sawka was told there is a 50-per-cent chance the cancer will return and metastasize.
She hopes the WRHA investigation will lead to stronger policies and protocols so others don't have to go through what she did.
"Especially with lumps and bumps, just take the extra time and effort to check it out, and make sure you advocate for yourself to get that care that you need," she said.
"If you don't, you [could] end up dead."