Survivors seek resources for head and neck cancers
Wait-list for reconstructive surgery ranges between two and three years
Bernie Krewski was diagnosed with throat cancer in October 2004.
After long hours in the surgical chair, 32 radiation treatments and a 14-hour reconstructive surgery following his laryngectomy diagnosis — the 85-year-old was left with disintegrating teeth, no speech and major swallowing deficits.
But he was still alive.
One afternoon, Krewski sat in a chair at the University of Alberta's dental clinic where he was getting his teeth removed. To prepare for the process, he spent 60 hours in a hyperbaric chamber. In passing, his dentist made a comment about having implants one day. Krewski paid $3,000 for a set of dentures that didn't fit and he only wore for a day. For seven years Krewski puréed his food.
“He had such low self-esteem and low image of himself with no teeth,” Krewski's wife Pat Sifred said in an interview with Postmedia who sat in to help translate for Krewski.
“It's hard enough with the stoma but to have no teeth and to be on puréed foods all the time because you have no teeth to chew is difficult.”
After a long wait and being in limbo after his referral to the Institute for Reconstructive Sciences in Medicine (IRSM) based at the Misericordia Community Hospital was lost, Krewski was able to get in to see his surgeon in March 2014.
The IRSM works with patients who require facial reconstruction following head and neck cancer or trauma or to replace structures missing at birth. After many mouth impressions, long sittings in a dental chair and hours of team support later, he finally had teeth implanted, which has “dramatically” changed his life.
But after being a patient with the IRSM for 10 years, where he still goes to for regular checkups, Krewski is raising concerns about the lack of access for patients who need necessary surgeries from the IRSM to improve their quality of life after invasive head and neck cancer treatments.
Krewski has become an advocate for patients seeking care. He was asked to sit on the wait-list committee where he says he's spoken to a number of patients. Right now he said there are around 150 patients who haven't been able to receive any kind of service from the IRSM.
He said currently the wait-list is between two to three years to even get in — Krewski added that no new patients are currently being admitted.
“It is extremely painful for me to have gained such a rich and unusual life as a cancer patient, despite my prevailing disabilities, and realizing that others in circumstances like mine may not have the same opportunity. Without the benefits of this life-changing service, patients will needlessly endure ordeals like the following — a distorted face, impaired speech, eating puréed food, frequent social rejection, loss of self worth, and similar agonizing experiences as I had during the early stages of my recovery,” Krewski stated.
According to the Canadian Cancer Statistics Dashboard, 7,900 Canadians are projected to be diagnosed with head and neck cancer. An estimated 239,100 Canadians will be diagnosed with cancer in 2023. Head and neck cancer diagnosis make up 3.3 per cent of cancer diagnoses in Canada — making it one of the least common.
Krewski said what sets head and neck cancer apart is the treatment necessities that are involved and is highly interdisciplinary involving a range of treatments like surgery, radiation, chemo and speech therapy, among others. The effect is also frequently visible — Krewski pointed to the stoma on his throat.
He said head and neck cancer advocacy tends to be “voiceless.”
In a statement to Postmedia, Alberta Health Services said the clinic's priority has always been to deliver care to patients who need necessary surgery and that AHS will continue working with Covenant Health and surgical teams to get patients the necessary care they need “in a timely manner.”
“The clinic's priority has always been to deliver excellent patient care for often vulnerable patients who require face and neck reconstruction and rehabilitation to increase their quality of life,” the statement said.
AHS did not address inquiries about the wait-list.
Krewski said there are currently only two clinicians who are taking on the load — after one resigned not too long ago.
He said when he spoke to his surgeon, he hadn't heard if his contract, which expires in June, would be renewed.
“The concern right now is with that resignation, there's concerns I'm assuming among patients that this area of the IRSM is not going to exist anymore, which puts these patients in a difficult position.
“Our doctor has heard nothing about renewing his contract. As far as we know is, he's likely to leave June 30. I will be devastated,” Sifred said.
Both Krewski and Sifred said more needs to be done to attract health care professionals who are able to do the necessary reconstructive surgeries that places like the IRSM are able to offer. They're hoping with more funding put into the field the care Krewski was able to receive from the IRSM will become more accessible to patients.